Society, Behaviour and Epilepsy

NEUROLOGY – LABORATORY AND CLINICAL RESEARCH DEVELOPMENTS

SOCIETY, BEHAVIOUR AND EPILEPSY No part of this digital document may be reproduced, stored in a retrieval system or transmitted in any form or by any means. The publisher has taken reasonable care in the preparation of this digital document, but makes no expressed or implied warranty of any kind and assumes no responsibility for any errors or omissions. No liability is assumed for incidental or consequential damages in connection with or arising out of information contained herein. This digital document is sold with the clear understanding that the publisher is not engaged in rendering legal, medical or any other professional services.

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NEUROLOGY – LABORATORY AND CLINICAL RESEARCH DEVELOPMENTS

SOCIETY, BEHAVIOUR AND EPILEPSY

JAYA PINIKAHANA AND

CHRISTINE WALKER EDITORS

Nova Biomedical Books New York

Copyright © 2011 by Nova Science Publishers, Inc. All rights reserved. No part of this book may be reproduced, stored in a retrieval system or transmitted in any form or by any means: electronic, electrostatic, magnetic, tape, mechanical photocopying, recording or otherwise without the written permission of the Publisher. For permission to use material from this book please contact us: Telephone 631-231-7269; Fax 631-231-8175 Web Site: http://www.novapublishers.com NOTICE TO THE READER The Publisher has taken reasonable care in the preparation of this book, but makes no expressed or implied warranty of any kind and assumes no responsibility for any errors or omissions. No liability is assumed for incidental or consequential damages in connection with or arising out of information contained in this book. The Publisher shall not be liable for any special, consequential, or exemplary damages resulting, in whole or in part, from the readers‘ use of, or reliance upon, this material. Independent verification should be sought for any data, advice or recommendations contained in this book. In addition, no responsibility is assumed by the publisher for any injury and/or damage to persons or property arising from any methods, products, instructions, ideas or otherwise contained in this publication. This publication is designed to provide accurate and authoritative information with regard to the subject matter covered herein. It is sold with the clear understanding that the Publisher is not engaged in rendering legal or any other professional services. If legal or any other expert assistance is required, the services of a competent person should be sought. FROM A DECLARATION OF PARTICIPANTS JOINTLY ADOPTED BY A COMMITTEE OF THE AMERICAN BAR ASSOCIATION AND A COMMITTEE OF PUBLISHERS. Additional color graphics may be available in the e-book version of this book. Library of Congress Cataloging-in-Publication Data Society, behaviour and epilepsy / editors, Jaya Pinikahana, Christine Walker. p. cm. Includes index. ISBN 978-1-61761-385-2 (eBook) 1. Epilepsy--Social aspects. I. Pinikahana, Jaya. II. Walker, Christine, Ph. D. RA645.E64S636 2010 362.196'853--dc22 2010027274

Published by Nova Science Publishers, Inc.  New York

Contents Preface

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About the Contributors

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Chapter I

Towards a Better Understanding of Living with Epilepsy: The Lived Experience of Seizures Jaya Pinikahana and Joanne Dono

Chapter II

Indicators of the Social Consequences of Epilepsy Kevin M. Brown

Chapter III

From Public to Personal: A Social and Ethnographic View of Epilepsy Lisa Francesca Andermann

1 17

29

Chapter IV

Quality of Life in Epilepsy Deirdre P. McLaughlin

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Chapter V

Addressing the Treatment Gap in Epilepsy Christine Walker

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Chapter VI

Health Literacy and the Outcomes of Care among Individuals with Epilepsy Ramon Edmundo D. Bautista and Maria Adela B. Bautista

Chapter VII

Epilepsy and Employment Malachy Bishop and Chung-Yi Chiu

Chapter VIII

Gender and Epilepsy: Clinical, Social and Psychological Impact R. Shallcross, R. L. Bromley and G. A. Baker

Chapter IX

Sociology and Epilepsy: Mind-body Medicalisation Peter Morrall

Chapter X

Crossing Continents: Meanings and Management of Epilepsy among People of Pakistani Origin Living in the UK Penny Rhodes and Neil Small

73 93

115 143

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vi Chapter XI

Contents Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span Avani C. Modi and Shanna M. Guilfoyle

Chapter XII

Social Competence and Children with Epilepsy K. Rantanen, K. Eriksson and P. Nieminen

Chapter XIII

Psychosocial Adjustment in Children with Epilepsy and Their Families Soraya Otero-Cuesta and Amador Priede

175 207

227

Chapter XIV

Perspectives on Depression in Epilepsy Adrian Palomino and Alexander W. Thompson

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Chapter XV

Depression in People with Epilepsy Elizabeth Reisinger Walker and Colleen DiIorio

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Chapter XVI

Epilepsy in the Elderly: Diagnostic Approach and Treatment Sophie Dupont, B. De Toffol, Marc Verny, and Caroline Hommet

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Chapter XVII Use of Complementary and Alternative Medicine for Treatment of Epilepsy Reyna M. Durón and Kenton R. Holden

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Index

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Preface What is it like to live with epilepsy? How does this common neurological condition impact on the lives of those who have it and the people who care about them? How far have communities come in their understandings of epilepsy? These seemingly simple questions and the answers to them can be as diverse as the contexts in which they are framed. Consider for the moment the experience of a person with epilepsy in a remote mountain village in northern China, or the experience of another person in New York. How different their experiences are, will depend on their access to treatment, supplies of medicines, their own understanding of the condition and their families understanding as well as how many barriers their communities put in the way of them participating in their community. The authors cannot assume that the person surrounded by all the accoutrements of a modern industrial economy will have better outcomes to the person in remote China. Social and behavioral researchers need to analyse the multifaceted contexts of each society such as the social position each person holds in his or her own community; the resources they can access, including treatments and medicines; their cultural contexts; access to education and employment and how the attitudes of others around them create barriers or open the way to more opportunities. While those contexts make such questions complex, additionally epilepsy itself is no longer a simple diagnosis. Syndromes and seizure types of this condition will be experienced by people in the many different contexts in which they live their lives. A complex condition is experienced in an increasingly complex world. Questions such as those above must be tailored to suit each context in which they are asked. Thus the experience of the person with epilepsy in remote northern China may be quite different to the person in New York‘s experience, or it may indeed have some surprising similarities. But no single answer will be found. The predominant reason social and behavioural researchers are driven to explore epilepsy in relation to these contexts, is to improve people‘s lives. Clinical and pharmacological research in epilepsy has led to huge advances in the diagnosis and care of people with epilepsy, giving many people with epilepsy the opportunity to live safely in their communities, pursuing their own life choices. However, whereas in other diseases such as cancer, syphilis and tuberculosis, similar medical advances have served to remove long-held prejudices and change attitudes towards those with the conditions, this has not been the case with epilepsy. Parallel to these clinical advances in the care of epilepsy runs another body of deeply ingrained beliefs and behaviours-lived experience of social exclusion; social concepts

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of epilepsy, all of which form a layer of community attitudes. These beliefs and behaviours may sometimes be dismissed as prejudices or superstitions which can be ameliorated through better education on the physiological aspects of epilepsy. But they continue despite such efforts at education because they carry with them the weight of history and are deeply embedded in every society and every social structure. It is only by bringing them into the light of day they can be actively addressed through the application of policies and programs relating to social inclusion, or equal rights and social justice. This book takes as its point of departure that neurological medical research and pharmacological research has provided massive benefits to the care of people with epilepsy but it has not addressed the social needs of people with epilepsy. That is not its role. Now is the time to make the social advances commensurate with those neurological and pharmacological benefits. This can only be done by furthering The authors understanding of what such questions as the ones above, mean for people with epilepsy, their community and then using the results to inform policies and programs. Each chapter of this book discusses an aspect of epilepsy such as experience or its care and treatments within the specific social and behavioural contexts in which it is experienced. The aim is to highlight those policy and program areas where community leaders need to direct their energies to improve the lives of people with epilepsy. The first eight chapters concentrate on broad demographic issues while the next nine discuss more specific issues relating to the experience and care of epilepsy. Chapter I begins the journey with a study which documents one aspect of the lived experience of epilepsy-self-perceived warning signs, initial symptoms and triggers of epileptic seizures. Respondents to a survey who perceived they had warnings of seizures reported the techniques they undertook to avoid those seizures occurring. These results demonstrate some respondents were able to recognise warning signs, initial symptoms and triggers of seizures, and some were able to stop seizures. This suggests scope for developing interventions, such as promoting avoidance of high risk triggers, to supplement existing treatments of epilepsy. Chapter II presents Australian data that for the first time estimate the proportion of the population affected by epilepsy in an inclusive sense, that is provide combined figures for both those suffering epilepsy and their household members. It is argued that the key issues for the better understanding of the realities and determinants of living with epilepsy can be set out in three major research strands: the need for (more) accurate prevalence data; the fuller use of existing official statistics/data sources and quality of life issues. These data form the basis for more accurate and informed debates on the role of stigma and discrimination in epilepsy. Chapter III is a review of literature from the social sciences on the lived experience of epilepsy. It includes a discussion of the influences on public perceptions and examines stigma relating to epilepsy through some examples from current literature, the arts and the Internet. The author argues that while there has been progress in certain areas of public education, stigma reduction and perception around epilepsy, work still remains to be done. She identifies health disparities and immigrant and newcomer health as areas of particular concern. Chapter IV continues with the themes from previous chapter, by examining the concept of quality of life (QOL) and the psychosocial issues that affect QOL of people with epilepsy. From the perspective of adult life span, the chapter looks at the functioning of adults and

Preface

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older adults with epilepsy and discusses the differences in the manifestations and impact of epilepsy on QOL across the adult lifespan. Chapter V uses a political economy of health approach to explore the treatment gap in epilepsy across both developing and developed economies. This chapter undertakes an analysis of health systems and health financing that contribute to the treatment gap and looks at some of the health systems reforms that would assist in closing the treatment gap. Chapter VI represents another under-developed area where epilepsy is concerned. Health literacy is known to be associated with quality of life and optimal disease management. However little is known of health literacy and epilepsy and there have been few attempts to improve health literacy among people with epilepsy and their caregivers. The authors argue that models may be adopted from other conditions and new models developed in order to optimize epilepsy care and accelerate the societal integration of these individuals. Chapter VII addresses the important issue of unemployment and underemployment of people with epilepsy. Despite improved treatments and legislation to improve employment opportunities for people with disabilities, adults with epilepsy have relatively low levels of employment. The complex factors involved in employment of people with epilepsy is viewed from an international perspective exploring the barriers to employment as well as the value of epilepsy-specific employment programs. Chapter VIII argues that gender is an important aspect to consider in epilepsy care though research often treats people with epilepsy as a homogenous group. Healthcare professionals need to be aware of gender differences in the management of people with epilepsy and information needs to be tailored to suit both genders. Chapter IX takes the reader on a different journey with a critical examination of the ‗medicalisation‘ of epilepsy and its status as both a medical condition and a stigmatized condition. The author argues that epilepsy attracts both stigmatisation and medicalisation of the mind and body. Interpersonal and social reaction to epilepsy results in subjective experiences of ‗shame‘, ‗spoiled identity‘, ‗discredited status‘, and ‗hidden distress‘. However, the author concludes that people with epilepsy make the trade-off of living with a level of stigma in order to benefit from the effective management achieved under ‗mind-body medicalisation.‘ Chapter X shows another level of complexity regarding Western medicine. A Pakistani community in the United Kingdom combines traditional beliefs and practices with a strong belief in the efficacy of Western medicine. The resulting hybrid experience, the authors argue, is likely to be a characteristic of migrant communities worldwide. Chapter XI undertakes an evaluation of the problem of adherence to antiepileptic drugs, which is largely underappreciated and unrecognized. The authors explore the current state of adherence research in both adult and paediatric epilepsy. They evaluate adherence measurement issues, how predictors of adherence are measured and interventions to promote adherence as well as looking at directions for future research. Chapter XII reviews social issues associated with childhood epilepsy. Children with epilepsy are at risk for developing behavioral problems and impaired social competence. After summarising definitions of social competence, this chapter focuses on current knowledge about social competence, including behavior problems related to epilepsy. The authors discuss the need for early assessment of social competence in children and that it is important to support the development of appropriate psychosocial skills to avoid long-lasting social and behavioural problems.

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Chapter XIII continues the focus on children with epilepsy and their families. While the problems present in children with epilepsy are similar to those in the general population, there are some symptoms relatively specific to children with epilepsy, for instance attention problems, social problems and thought problems. These are more likely to be related to family factors, including family coping with illness, parent-child relationships and stress. The authors argue that future research and interventions should include the use of psychiatric interviews and direct observation to gather information on psychopathology instead of assessments exclusively relying on scales and questionnaires, while neuropsychological assessment and neurodevelopmental perspectives are essential to develop models explaining complexity of relationships between epilepsy, brain, and behaviour. Multidisciplinary approaches are also necessary to develop interventions in such a complex area. Chapter XIV turns readers‘ attention to depression in epilepsy, a common comorbidity. This chapter looks at the relative values of different approaches to depression, the purely clinical, the biopsychosocial and the ‗four perspective‘ approach which attempts to guide treatment for depression where it is interconnected with multiple factors including seizures, cognitive problems and side-effects of anti-epileptics. Chapter XV continues with depression, this time focussing on the barriers and facilitators for treatment of depression among people with epilepsy. When depression is recognised intervention can be made to treat it. The literature on depression and epilepsy is examined in this chapter, with regard to the factors influencing the diagnosis and treatment of depression among people with epilepsy, addressing barriers to treatment, and approaches for treating depression in people with epilepsy. The chapter concludes with suggested future research. Chapter XVI considers epilepsy in the elderly, an important area in view of the ageing of the population in developed countries. Epilepsy is particularly complex in older people since they are more likely to have co-morbidities than younger individuals. At the same time epilepsy may be confused with other conditions such as stroke or dementia thus delaying the diagnosis. Treatment must be adapted to the particular susceptibilities of elderly people. Chapter XVII finally addresses the common usage of complementary and alternative medicines (CAM) for epilepsy throughout the world. The authors consider herbal medicines, acupuncture, prayer, music and meditation as well as diet-based treatments. CAM use is associated with the belief it is safe and effective, as well as higher levels of education. It may also be associated with dissatisfaction with AEDs or their lack of availability. At the same time in cultures where epilepsy is held to be caused by supernatural forces CAM use is often the preferred treatment. The authors argue there are five possible outcomes associated with CAM use and some of these outcomes may be detrimental for the individual. The authors consider open discussion about CAM should be promoted in association with education programs and access to treatment. Research into adjuvant therapies might also determine which CAM are affective. Jaya Pinikahana and Christine Walker

About the Contributors Gus A. Baker, PhD, FBPsS, is a Consultant Clinical Neuropsychologist, Professor of Clinical Neuropsychology in the University Division of Neurosciences at the University of Liverpool, UK. He obtained his master‘s degree and his PhD from the University of Liverpool, both in the field of clinical psychology/neuropsychology (medicine). The focus of Professor Baker‘s research is understanding the impact of chronic diseases, especially epilepsy. One outcome of this research, supported by Wellcome and Medical Research Council grants, has been the development of methodology to quantify the different effects of treatment. This methodology has been used to assess the efficacy of new drug and surgical treatments for epilepsy. An author or co-author of more than 200 books, chapters, and articles—appearing in such peer-reviewed journals as the Epilepsia, Epilepsy and Behaviour, Neurology and Epilepsy Research and The New England Journal of Medicine—on the psychological and neuropsychological consequences of epilepsy, Professor Baker is also a member of the editorial board of Epilepsy and Behavior and Seizure. Professor Baker has served as a member of the International League Against Epilepsy (ILAE) commission on the burden of epilepsy and the IBE Research Commission. The latter commission advises the ILAE on all matters pertaining to outcome measures for use in clinical practice and research. Underscoring the international scope of his endeavors, he has served as a member of the Center for Disease Control and Prevention‘s working party for epilepsy. Professor Baker is a past recipient of the Ambassador for Epilepsy Award of the ILAE/International Bureau for Epilepsy (IBE) in recognition of his international contribution to activities advancing the cause of epilepsy. In 2001, Professor Baker was awarded the British Psychological Society lifetime award for distinguished contribution to professional psychology in recognition of his services to epilepsy. Professor Baker is also a member of the Global Campaign Against Epilepsy, a World Health Organization/ILAE/IBE initiative. Colleen Di Iorio, PhD, RN, FAAN, is Professor in the Department of Behavioral Sciences and Health Education at Rollins School of Public Health at Emory University in Atlanta, Georgia, U.S.A. Dr. Di Iorio earned a doctoral degree in nursing research and theory development from New York University, a masters degree in nursing from New York University and a baccalaurate in nursing from the University of Iowa. Her work in epilepsy self-management has included the study of psychosocial factors associated with medication adherence and self-management practices and factors associated with depression, stigma, and quality of life among those with epilepsy. Dr. Di Iorio has been involved in the development of the Managing Epilepsy Well (MEW) Network and serves as the director of the MEW

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Network coordinating site at Emory University. Recently, she has developed an Internetbased, theory driven self-management program for promoting self-management among people with epilepsy. The program named WebEase is currently being evaluated in a randomized controlled trial funded by the United States Centers for Disease Control and Prevention (CDC). She received the Distinguished Nurse Scholar Award from New York University and the Distinguished Alumni Award from the University of Iowa. Jaya Pinikahana MSc, PhD is Principal Social Researcher/Head, research division at the Epilepsy Foundation of Victoria, Australia. Since completing his PhD in 1990, he has gained research experience in numerous areas including chronic illness, mental illness and ageing. He was the chief investigator for a WHO funded study on malaria transmission in Sri Lanka in the early 90s. He swapped life in Sri Lanka as a senior university lecturer to being a senior researcher in Western Australia. Prior to coming to the Epilepsy Foundation of Victoria, he worked as a research fellow at the National Ageing Research Institute in Melbourne and as a senior research fellow in nursing at Monash University, Victoria. He has published more than 30 papers in national and international journals. Jaya has been extensively involved in teaching general sociology, health sociology, and research methods for arts, medical and nursing students in Sri Lanka, the United Kingdom, New Zealand and Australia. He is a regular reviewer of manuscripts for health and nursing journals and funding bodies. He is a co-editor of Social Epileptology: Understanding Social Aspects of Epilepsy published by Nova Science Publishers in 2009. Joanne Dono has a Honours degree in Psychology from Deakin University, Melbourne and is currently working towards obtaining a Masters degree in Organisational Psychology at the University of Adelaide. She was employed by the Epilepsy Foundation of Victoria as a research assistant while the research regarding subjective experiences of seizures was carried out. Christine Walker PhD is a member of the Management Committee of the Epilepsy Foundation of Victoria and the President of Epilepsy Australia. She is an experienced social researcher specializing in the area of health policy and health services that relate to the needs of people with chronic illnesses. She is currently a Chief Investigator in several Australian National Health and Medical Research Council research grants on diabetes and heart disease. Having conducted research into the value of chronic disease self-management as a strategy to prevent chronic diseases, she has published the results in national and international journals. More recently she has written several reports on the status of epilepsy in the Australian community. She has co-edited a book on chronic illness which presents the most recent thinking about approaches to the care of people with chronic illnesses in Australia. In April 2007 Christine received an award from the University of New South Wales Research Centre for Primary Health Care and Equity for her contribution to chronic disease care. She is currently the CEO of the Chronic Illness Alliance, Australia. She is a co-editor of Social Epileptology: Understanding Social Aspects of Epilepsy published by Nova Science Publishers in 2009. Ramon Edmundo D. Bautista, M.D., M.B.A. is Associate Professor of Neurology and Director of the Comprehensive Epilepsy Program, University of Florida Health Science Center in Jacksonville, Florida. Dr. Bautista graduated from the University of the Philippines College of Medicine and completed his residency in neurology at Washington University in St. Louis, Missouri. He did post-graduate training in clinical neurophysiology and epilepsy at Emory University in Atlanta, Georgia and Yale University in New Haven, Connecticut. Dr.

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Bautista is a member of the American Academy of Neurology and the American Epilepsy Society. His research interests include clinical epilepsy and neurophysiology as well as health-related outcomes of epilepsy care. His publications can be found in various peerreviewed journals such as Neurology, Epilepsia, Epilepsy and Behavior, and Seizure. Maria Adela B. Bautista, M.D. obtained her medical degree from the University of the Philippines. She finished a research internship at the Jacksonville Health and Transition Services program at the University of Florida Health Sciences in Jacksonville, Florida and is currently completing a Masters degree in Public Health at the University of North Florida. Avani C. Modi, PhD, is Assistant Professor at the University of Cincinnati College of Medicine and within the Center for the Promotion of Adherence and Self Management in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children's Hospital Medical Center. Dr Modi's program of research focuses on adherence to pediatric medical regimens, including the measurement of adherence and identifying barriers to effective disease management. Dr Modi, received a K23 Career Development Award from the National Institutes of Health (K23 HDO57333) documenting patterns of adherence in children with new-onset epilepsy (ages 2-12 years), developing a surrogate marker of adherence and identifying predictors of adherence that will serve as the focus of future intervention trials to improve adherence. In addition, Dr Modi is a co-investigator on grants examining 1) longitudinal outcomes in adolescents with extreme obesity undergoing bariatric surgery and 2) designing and implementing a web-based assessment of barriers to adherence for children and adolescents with sickle cell disease. Shanna M. Guilfoyle, PhD, is a Postdoctoral Fellow in the Center for Adherence Promotion and Self-Management at Cincinnati Children‘s Hospital Medical Center. She completed her doctoral work in Clinical Psychology with emphasis on Child Clinical Psychology at the Kent State University and internship within the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children's Hospital Medical Center. Her research interests include examining parenting and family factors and their relative impact on adherence to pediatric treatment regimens and clinical outcomes in children managing chronic illnesses. Elizabeth Reisinger Walker, MAT, MPH is a doctoral student in the Department of Behavioral Science and Health Education in the Rollins School of Public Health at Emory University, Atlanta, Georgia, U.S.A. Ms. Walker earned a Master of Public Health from Emory University, a Master of Arts in Teaching from Johns Hopkins University, and a baccalaureate in biology and history from the University of Rochester. She is a research assistant on WebEase, a theory-driven, web-based, self-management program for people with epilepsy. She has presented at the American Public Health Association annual conference and is an author on several peer-reviewed articles. Ms. Walker has received a Woodruff Fellowship from Emory University for her MPH and doctoral studies and several awards from the University of Rochester for student leadership and academic excellence. Deirdre McLaughlin, PhD, is a Research Fellow with the Men, Women and Ageing study at the University of Queensland, School of Population Health. She holds a Bachelor of Behavioural Science, Bachelor of Science and PhD in psychology. Deirdre‘s background is in health psychology and her research has included health related quality of life issues and coping with chronic illness. Her doctoral thesis examined the impact of epilepsy on the quality of life of older adults. Deirdre has also worked with Epilepsy Queensland Inc examining the impact of chronic disease on families and has produced a report entitled

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―Living in the Shadows: Families who care for children with uncontrolled epilepsy or epilepsy and another disability‖. Deirdre is a registered psychologist and is a member of the Australian Psychological Society and is the current national treasurer and state secretary of the Psychology of Ageing Interest Group of the APS. Rebekah Shallcross, BSc, is currently conducting research at the University of Liverpool, UK as part of her Doctorate degree. She obtained her undergraduate psychology degree from Royal Holloway and Bedford New College, The University of London, UK. Ms Shallcross‘ research compares the developmental, cognitive and behavioural outcomes of children exposed in utero to Antiepileptic medications, which she has presented at various national and international conferences. Rebecca L. Bromley, PhD, is currently a Research Associate at the University of Liverpool, UK. She obtained her undergraduate and PhD degree from the University of Liverpool, UK, both in the field of psychology. Her main area of interest is the cognitive, behavioural and neurodevelopmental profile of children exposed in utero to antiepileptic medication, and has published several articles within this area. She has received the American Epilepsy Societies and the ILAE young investigators travel awards to present her work internationally. Recently, she was also successful in securing a Epilepsy Research UK grant in order to carry out further research regarding cognitive outcome and in utero exposure to the second generation antiepileptic medications, furthering and expanding our knowledge in this very important area. Neil Small is Professor of Health Research in the School of Health Studies, University of Bradford, UK. He is a sociologist with a long standing interest in health inequalities and in chronic and life limiting illness. His current research is on ethnicity and health and is centred on the large scale birth cohort study, Born in Bradford. Penny Rhodes is Senior Research Fellow at the Bradford Institute for Health Research, Bradford Hospitals NHS Teaching Trust. Most of her work has been in the field of health and social care, with a particular focus on chronic illness and patient/service user involvement in the research process. She is currently working with the Yorkshire Quality and Safety Research Group. Malachy Bishop is Professor of Rehabilitation Counseling at the University of Kentucky. Dr. Bishop completed his doctoral study in Rehabilitation Psychology at the University of Wisconsin-Madison. He conducts research primarily in the areas of quality of life, adaptation to disability, and the psychosocial aspects of living with neurological conditions including epilepsy, multiple sclerosis, and brain injury. He is a member of the Epilepsy Foundation of America‘s Professional Advisory Board and has served on the American Epilepsy Society‘s Task Force on Employment Issues. He has authored over 50 articles in rehabilitation and related professional journals. Chung-Yi Chiu, PhD, is Assistant Professor in the Department of Rehabilitation Counseling, School of Health Professions, University of Texas Southwestern Medical Center at Dallas. Dr. Chiu received her PhD in Rehabilitation Psychology from the University of Wisconsin-Madison and a master‘s degree in occupational therapy from the National Taiwan University. She is currently a consulting editor for the Australian Journal of Rehabilitation Counseling and serves on the board of the North Texas Area Rehabilitation Association.

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Soraya Otero-Cuesta, MD, PhD is a Consultant in Child and Adolescent Psychiatry, Child and Adolecent Psychiatry and Psychology Unit, Department of Psychiatry, University Hospital Marques de Valdecilla, Santander, Cantabria, Spain. Associated Lecturer on Child and Adolescent Psychiatry, School of Medicine, University of Cantabria, Spain Amador Priede is a Clinical Psychologist, Child and Adolecent Psychiatry and Psychology Unit, Department of Psychiatry, University Hospital Marques de Valdecilla, Santander, Cantabria Lisa Andermann MPhil, MDCM, FRCPC is Assistant Professor in the Department of Psychiatry at the University of Toronto and psychiatrist at Mount Sinai Hospital, where she works in the Psychological Trauma Clinic as well as the Ethnocultural Assertive Community Treatment Team. She is also a psychiatric consultant with the Canadian Centre for Victims of Torture. She has a longstanding interest in social aspects of epilepsy and has done research on epilepsy in developing countries, with fieldwork in Ethiopia. Together with Dr. Steven Schachter, she co-edited The Brainstorms Village: Epilepsy in our world (2003); republished by Oxford University Press in 2008 as Epilepsy in our world: Stories of living with seizures from around the world), a collection of first-person narratives written by people with epilepsy from over 20 countries. She has an undergraduate degree in Anthropology from McGill University, where she completed her medical studies, and a graduate degree in Social Anthropology from Cambridge University. Sophie Dupont is Associate Professor, ―Maître de conferences‖, in the Clinical Epilepsy Department at La Pitié-Salpêtrière Hospital (Paris, FRANCE). She has specialized in clinical epilepsy, antiepileptic clinical trials, and neuroimaging. She also works at the anatomy department of the Pitiè-Salpêtrière University and the CRICM research unit located in Paris. Dr Dupont trained in adult neurology and neuroradiology at the Pitiè-Salpêtrière Hospital. Dr Dupont received her PhD degree in neuroscience at the university of Paris VI. Her research interests focus on neuroimaging and memory in adult epilepsy patients. She is the author or co author of several clinical and research papers in such journals as Brain, Neurology, Annals of Neurology. Bertrand de Toffol PhD is Professor of Neurology, head of the Neurology Department at Tours Hospital. He has specialized in neurology and psychiatry and he is past president of the French Chapter of the International League Against Epilepsy (ILAE). He has special interest in both psychiatric disturbances in epilepsy and clinical neurophysiology. Prof de Toffol received his PhD degree in neuroscience at the university of Paris VI in 1991. He is the author or co-author of several books devoted to epileptology and of more than 130 papers indexed in PubMed. Marc Verny PhD is Professor of Geriatry and he is chief of the Geriatric Department at La Pitié-Salpêtrière Hospital. He has specialized in neurological diseases in the elderly with particular attention to the interaction between neurological diseases and systemic pathologies. He has a special interest in dementia. Pr VERNY trained in adult neurology and geriatry at the Pitiè-Salpêtrière Hospital. He has received his PhD degree in neuroscience at the university of Paris VI. His research interests focus on dementia in older patients, notably diagnostic difficulties and neuropathologic correlations. He is the author or coauthor of several clinical and research papers in such journals as Brain, Neurology, Annals of Neurology, Journal of American Geriatric Society, Age and Ageing.

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Caroline Hommet PhD is Professor of Geriatrics and the chief of the department of Neuropsycholology in Aging and the Regional Memory Center in Alzheimer Disease and related disorders. Her special interest concerns neurological diseases in the elderly, particularly dementia. Pr Hommet received her PhD degree at the university of Tours. Her research interests focus on dementia, neuropsychology, clinical epilepsy, and neuroimaging. She also works at the INSERM U 930 research unit (Imaging and Brain) located in Tours. She is the author or co-author of several clinical research papers in journal‘s such as Journal of American Geriatric Society, Neuropsychologia, Demntia and Geriatric Cognitive Disorders or Neurosciences and Biobehavioral review. Kevin M Brown, PhD is a Sociologist who has researched and published widely in the areas of community association, the third sector, social capital and social exclusion. In 2006-7 he was the foundation researcher at the Epilepsy Foundation of Victoria where he helped initiate and grow a social research agenda. Current research includes comparative forms of active citizenship, Asian cosmopolitanism, the social effects of community sport involvement and the hidden costs of volunteering. He is currently a senior lecturer in sociology at Deakin University, Melbourne where he is also deputy director of the Centre for Citizenship, Development and Human Rights at Deakin University. He is the immediate past President of the Australia and New Zealand Third Sector Research Association. Adrian Palomino, MD is a first-year internal medicine resident at the University of California at Davis Medical Center in Sacramento, CA. Prior to moving into internal medicine training, he completed one year of psychiatry training at the University of Washington. His academic interests include the intersection between medical, neurological, and psychiatric illness, and the treatment of substance abuse in the primary care setting. Alexander W Thompson, MD, MBA, MPH is an attending inpatient and consultation – liaison psychiatrist at the Texas AandM affiliated Scott and White Hospital in Temple, TX. He completed a health services research fellowship at the University of Washington after completing psychiatry training at Johns Hopkins Hospital. His clinical and research interests include the management of psychiatric aspects of neurological disorders. Kati Rantanen MA has specialised in clinical neuropsychology (Lic.A., 2007). During 1999-2005 she worked as a psychologist at the municipal family guidance center. Currently, from 2007 she has been working as a psychologist in the Department of Pediatrics, Tampere University Hospital and at the same time from 2004 she has been working as a clinical neuropsychologist and researcher in the Psychology Clinic at the Department of Psychology, University of Tampere. She is preparing her academic dissertation focusing on neurocognitive functioning and social competence of preschool children with epilepsy. Kai Eriksson MD, PhD is currently the head of the Pediatric Neurology Unit, Tampere University Hospital and Pediatric Neurology Research Group, Medical School, University of Tampere. He specialised in pediatric neurology at Tampere University during the 1990s and his academic dissertation in 1998 focused on epidemiological, clinical and treatment aspects of childhood epilepsy and status epilepticus. During the 1990s he was visiting researcher at Stanford University Medical School, USA and at the Hospital for Sick Children, Great Ormond Street, London, UK. After that he has acted as an associate professor of pediatric neurology at the Medical School at the University of Tampere from 1999-2003 and subsequently a professor of pediatrics from 2004-2006. Since 2007 he has held the current posts and authored several book chapters and original articles focusing on epidemiology, treatment and neurocognitive as well as social aspects of childhood epilepsy. He is currently

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the chair of the Finnish National Guideline Group for pediatric epilepsy and Finnish Pediatric Neurology Society. Pirkko Nieminen PhD, specialised in clinical neuropsychology in 2002 and in psychology of acute crisis in 2004. From 1971-1988 she worked as assistant, senior assistant and lecturer in the Department of Psychology, University of Tampere. After that she worked as a psychologist in the Department of Pediatrics, Tampere University Hospital and at the same time in 1990-2004 she had a post as lecturer or associate professor in Psykonet, the University Network of Psychology. Since 2005 she has been working as senior lecturer in the psychology department, University of Tampere, being the head of the Psychology Clinic. Her research work has focused on neurocognitive and social aspects of neurological diseases and rehabilitation of disabled children. Peter Morrall PhD is Senior Lecturer in Health and Sociology at the University of Leeds, UK. Peter's academic interests encompass madness, murder, sociology and health, crime and health, psychotherapy, sexuality, and thinking. His recent books include 'Murder and Society' (Wiley, 2006), The Trouble With Therapy: Sociology and Psychotherapy (McGraw-Hill, 2008), Sociology and Health: An Introduction (Routledge, 2009). Kenton R. Holden, M.D. is Professor of Neurosciences (Neurology) and Pediatrics at the Medical University of South Carolina, Charleston, South Carolina, USA where he also is the Director of Medical Student Clinical Neurosciences Education. In addition, he is Senior Clinical Research Neurologist at the Greenwood Genetic Center, Greenwood, South Carolina. He received his MD at the Medical College of Virginia, Pediatric residency at the Johns Hopkins Hospital, and Fellowship training in Child Neurology at the National Institutes of Health, Bethesda, Maryland. He has authored or co-authored more than 150 articles, abstracts, and book chapters. Many of these articles appear in peer-reviewed journals such as The New England Journal of Medicine; Epilepsia; Pediatrics; Journal of Pediatrics; Epilepsy and Behavior; Journal of Child Neurology; Developmental Medicine and Child Neurology, Seizure-European Journal of Epilepsy, American Journal of Medical Genetics, and American Journal of Human Genetics with aspects of epilepsy as one primary focus. He is a member of the American Epilepsy Society, the Child Neurology Society, and the International Child Neurology Association. He is also a member of the editorial board of the Journal of Child Neurology. In addition to his patient care responsibilities, Dr. Holden has participated in numerous funded clinical research projects on epilepsy including neonatal seizures, clinical evaluation of new anticonvulsants, and improving care of institutionalized people with epilepsy. Dr. Holden received the First Annual International Visiting Professor Award from the Child Neurology Society and the Fritz E. Dreifuss International Travel Award from the Epilepsy Foundation (USA) for travel to the developing country of Honduras, Central America to help establish a Neurology training program and participate in research on epilepsy and other neurologic illnesses. Reyna M. Durón, M.D. is a Neurologist, Epileptologist, and Clinical Neurophysiologist trained at the National Autonomous University of Honduras, Tegucigalpa, Honduras, Central America and the University of California at Los Angeles. She is a Consultant for several neurology services in Honduras and member of the Professional Advisory Board of the Epilepsy Foundation of Greater Los Angeles. She is the founder of epilepsy clinics in three cities of Honduras and has been part of educational projects on epilepsy for the Latino community in Los Angeles, California, USA. As a clinical research scientist, Dr. Durón has focused on the epidemiology, anthropology, and genetics of the epilepsies. She is part of

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several research teams on epilepsy inside and outside of Honduras. She has promoted several studies on the anthropological aspects of the epilepsies in several ethnic groups in Honduras. As part of an international study group, she has also participated in genetic studies of absence and myoclonic epilepsies. Dr. Durón has co-authored more than 20 publications on neurological subjects, predominantly on epilepsy. These articles and chapters have been published in peer-reviewed journals such as Epilepsia, Epilepsy and Behaviour, Neurology, Brain and Advances of Neurology. As Director of the Honduran Medical Journal, she has contributed to the socialization of updated concepts about epilepsy diagnosis and management, as well as neglected issues such as quality of life and access and adherence to epilepsy treatment.

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter I

Towards a Better Understanding of Living with Epilepsy: The Lived Experience of Seizures Jaya Pinikahana 1 and Joanne Dono 2 1. Principal Social Researcher, The Epilepsy Foundation of Victoria, Australia 2. Post graduate student, University of Adelaide, South Australia, Australia

Abstract The study aimed to document self-perceived warning signs, initial symptoms, and triggers of epileptic seizures and techniques to control seizures for people with epilepsy, and to establish patterns in these self-reported experiences of epilepsy in relation to age, gender and seizure type. Of the 338 people with epilepsy who had registered interest in participating in social research, 225 returned a self-report questionnaire (66% response rate) that contained information regarding demographic characteristics, living with epilepsy, and self-perceived warning signs, initial symptoms, triggers of seizures and techniques to control seizures. Of 225 respondents, 195 (86.6%) experienced at least one initial symptom prior to a seizure and 202 (89.8%) experienced at least one seizure trigger. Gender analysis of triggers revealed that females differed from males regarding seizures triggered by low blood sugar, dieting, fasting, touch and female specific triggers (menstruation, pregnancy and ovulation). Respondents reported tiredness as the most frequent trigger (65.3%), followed by stress (64%) and sleep deprivation (55.1%). Many respondents (63.6%) reported that they could predict seizure occurrence, with 91 (40.4%) also indicating that family members could predict seizure occurrence. A total of 157 (69.8%) respondents had tried at least one of 12 possible seizure avoidance techniques, with resting and medication the most frequently reported. Finding that respondents were  Correspondence: Dr Jaya Pinikahana BA Hons, MSc, PhD. Principal Social Researcher/Head, Research Division, The Epilepsy Foundation of Victoria, No 818, Burke Road, Camberwell, Victoria, 3124, Australia. Tel: 03 9805 9125; Fax: 03 9882 7159. Email: [email protected].

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Jaya Pinikahana and Joanne Dono able to recognise warning signs, initial symptoms and triggers of seizures, and some were able to stop seizures provides scope for developing interventions, such as promoting avoidance of high risk triggers, which supplement existing treatments of epilepsy.

Introduction Epilepsy is a common neurological disorder that affects people of all ages, ethnicity and levels of social status, yet the subjective experiences associated with living with epilepsy are generally not well understood. Epilepsy encompasses a number of seizure types, and characteristic conditions that are not only important diagnostically, but also appear to influence the subjective experience of having epilepsy. Indeed, the heterogeneous nature of epilepsy means that a person‘s experience of epilepsy can vary over time and can differ from others who have a similar neurological condition. One of the most debilitating aspects of epilepsy is the perceived lack of control over when a seizure may occur, and the dangers associated with loss of awareness (e.g. when driving or swimming; Litt and Echauz, 2002). Hayden et al., (1992) examined epilepsy patient perceptions and found that only 4.3% of respondents indicated that nothing worried them about having epilepsy. Furthermore, the most common concerns were seizure related, with 26.9% of respondents stating that the unpredictability, severity or control of their seizures was their main concern. While seizures are perceived as random events by many, it is also acknowledged that patterns do exist, and seizures can be promoted or inhibited by internal or external stimuli (Spatt et al., 1998). In fact, warning signs and initial symptoms of epilepsy have been recognised for centuries (e.g. Gowers, 1885). By the early 20th century, protective activities such as monitoring hydration levels, dietary ketosis, and controlling excessive emotional stress and fatigue were advocated as therapeutic measures (Aird and Gordon, 1993). The dietary and lifestyle methods of intervention declined following the improvement in antiepileptic medication and brain monitoring technology. However, the recognition that antiepileptic medication and surgery does not work for many people with epilepsy has renewed interest in using other therapeutic methods (Nakken et al., 2005). More recently, Haut et al., (2007b) found that patients can identify periods of increased risk of seizure. Warning signs that precede a seizure are called premonitory symptoms, and can occur from 10 minutes to several days in advance. Premonitory symptoms can be sudden and momentary, such as being in a dreamy state, body jerks, and giddiness, or continuous, such as irritability, lethargy and emotional changes (Hughes et al., 1993). Simple partial seizures (including auras) can also be considered a warning sign for many people who also experience other types of seizures (e.g. tonic clonic; Rajna et al., 1997). Of the few studies published on premonitory symptoms, the findings indicate that between 7% and 50% of the epilepsy population may experience at least one symptom (Hughes et al., 1993; Rajna et al., 1997; Schulze-Bonhage et al., 2006). A total of 60 different symptoms were reported in a study conducted by Hughes et al. (1993). While most seizures appear to occur spontaneously, they may be precipitated by a variety of endogenous or exogenous factors (Fenwick and Brown, 1989; Nakken et al., 2005). Precipitants can be defined as ‗those circumstances that precede the onset of an epileptic attack and are considered by both patient and neurologist to be a possible explanation for why

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the seizure happened when it did‘ (Nakken et al., 2005). According to Aird and Gordon (1993), seizure precipitants can be seizure inducing if they are environmental or endogenous in origin, or seizure-triggering if they are chemical or physiological stimulation factors. Flashing lights that can induce a seizure in a person with epilepsy is a well-known example of a seizure precipitant. As epilepsy is a group of heterogeneous disorders, each with a different physiology, seizure precipitants can vary widely amongst individuals (Fang et al., 2008). Few published studies exist on the subject of subjective experiences of seizure precipitants. Of those studies that have investigated seizure precipitants, the percentages of people with epilepsy experiencing at least one type ranges from 29% (N=148; Hughes et al., 1993) to 92% (N=75; da Silva Sousa et al., 2005). Furthermore, despite the variety in patients in terms of location, living situation and seizure type, the most common seizure precipitant across a number of studies is ‗stress‘ (see Table 1). Other precipitants that also rated highly include sleep deprivation, fever, tiredness, menstruation and missed medication. Table 1. Summary of studies that have investigated seizure precipitants Author

N

Most common precipitant (% of participants)

Country

100 194 79 75

% with seizure precipitants 83 63 92

Antebi and Bird (1993) Aziz et al. (1994) Cull et al. (1996) da Silva Sousa et al. (2005) Dawkins et al. (1993) Fang et al. (2008) Fisher et al. (2000) Frucht et al. (2000) Hart and Shorvon (1995) Hayden et al. (1992) Jarvie et al. (1993) Løyning et al. (1993) Nakken et al. (2005)

Anxiety (66%) Fever (26%) Stress (38%) Stress (83%)

UK Pakistan UK Brazil

29 120 818 400 1628

59 62 83 62 49

Interpersonal stress (55%) Fever/illness (32%) Stress (60%) Stress (30%) Stress (28%)

UK Taiwan US US UK

475 79 64 1677

81 26 82 53

Stress (41%) Stress (42%) Emotional stress (21%)

Spatt et al. (1998) Spector et al. (2000)

149 100

72 90

Sperling et al. (2008) Tan et al. (2005) Unsworth (1999)

200 40 82

65 32 37

Stress (34%) Tense/anxious/ worried/stressed (53%) Stress (49%) Stress (10%) Stress (-)

Australia UK US US, Denmark, Norway Austria UK US Singapore Australia

There are some issues associated with exploring subjective experiences of epilepsy. One issue is the influence of culture on perceptions. For instance, Asadi-Pooya and Sperling (2007) compared epilepsy patients in Iran and the USA for their beliefs about the relationship between food and seizures. They found that only 5.7% of patients in the US reported a relationship, whereas 55.2% of patients from Iran believed that consumption of specific foods provoked the occurrences of seizures. Asadi-Pooya and Sperling raised a number of

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possibilities for the results, including differences in cultural beliefs, traditions or superstitions, or attention paid to diet and lifestyle. Another issue is that despite evidence of people experiencing warning signs, initial symptoms and precipitants of seizures, the extent that seizures are predictable (and thus controllable) is contentious. Millet et al., (2001) argued that most seizures occur randomly and anecdotal reports of associations between seizures and specific activities (e.g. cognitive exertion) arise from people wanting to attribute a cause to seizures. They failed to find an association between cognitive exertion (a commonly mentioned seizure precipitant) and increased risk of seizure, and concluded that people may be unnecessarily restricting their lifestyles and miss many opportunities for fear of having a seizure. Conversely, Rajna et al., (2008) put forward a medical hypothesis that for people with weak epileptic susceptibility, the appearance of an epileptic seizure needs a very strong precipitating/provoking event, which is best managed by eliminating the event rather than taking antiepileptic drugs. Indeed, Aird (1983) achieved good results by promoting moderate lifestyle changes, with results that were comparable to using most of the new antiepileptic drugs. However, Rajna et al. did concede that the subjective nature of precipitating events is difficult to prove scientifically, and that there is extreme inter-individual variability. There is a growing acceptance that what precedes the seizure can be as important as the seizure itself (Mula, 2007). Although the research is limited, a number of studies have reported evidence of self-developed techniques used by respondents to abort or avoid seizures. The percentage of participants reporting that they could avoid or abort seizures ranged from 20% to 52%, and included strategies such as keeping calm, concentrating hard, lying down, and relaxation techniques (see Cull et al., 1996; da Silva Sousa et al., 2005; Lee and No, 2005; Rajna et al., 1997). Spector et al., (2001) explored the concept of perceived self-control in relation to seizures and found that while there was no statistical relationship between warning signs and perceived self-control, all those who experienced at least one seizure precipitant had high levels of perceived control of seizures. However, earlier research by Cull et al. (1996) demonstrated that those who claim to inhibit their seizures represent 68% of those who report having warnings and 60% of those who are aware of seizure precipitants. Although much is known about clinical, neurological, psychiatric and even therapeutic aspects of epilepsy, very few studies of seizure precipitants, warning signs and self-control of seizures have been published in Australia or overseas. The identification of warning signs and initial symptoms of seizures, and of precipitating seizure factors may facilitate the development of specific counter measures that supplement existing epilepsy therapies and interventions. It is evident that without information that provides an accurate profile of warning signs, initial symptoms, and precipitants of seizures, any preventive strategies can not be properly formulated. Thus the development of pre-emptive intervention requires robust information based on patient self-report. It is also important to establish whether people who experience warning signs or have precipitant factors preceding their seizures feel that they have any self control over inhibiting or avoiding seizures and the strategies they may use. Subjective experiences may be more useful in assisting health professionals to devise treatment plans tailored to the individual, and therefore improvements in awareness and understanding could encourage people to learn how to recognise warning signs, initial symptoms and precipitant factors of their seizures. Understanding the processes associated with their seizures may lead a person with epilepsy to feel like they have some control over their condition.

Towards a Better Understanding of Living with Epilepsy

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It was therefore the aim of this study to document the warning signs, initial symptoms and precipitating factors of epileptic seizures in a sample of people living with epilepsy. More specifically, the objectives were to examine the self-perception of warning signs, initial symptoms and precipitants of epileptic seizures in a sample of people with epilepsy; to investigate the perceived self-control of managing epileptic seizures and the techniques used; and to explore differences in demographic characteristics, living with epilepsy characteristics, and seizure types in relation to seizure prediction and self-control for people with epilepsy.

Method Participants were recruited from the Epilepsy Foundation of Victoria‘s social research participant register. A questionnaire, entitled the Seizure Prediction Tool (SPT), was constructed using different elements of the existing literature on the subjective experiences of epilepsy. The SPT contained both short-answer and multiple response questions and was designed to be a comprehensive assessment of subjective experiences leading up to a seizure, including awareness of warning signs, symptoms, and triggers of seizures, as well as any attempts to inhibit a seizure. Participants were also asked to provide details regarding demographics, living with epilepsy and seizure characteristics. Following ethics approval from Monash University‘s ethics committee, a package containing an introductory letter, a plain language statement, the SPT questionnaire and a reply paid envelope was sent to the people registered on the Epilepsy Foundation of Victoria social research database. The length of time estimated for completing the survey was 30 minutes. Data were collected for approximately 2 months following the initial mail out, and were then summarised and analysed using SPSS. Following the descriptive methods, the data were analysed for statistically significant associations between variables using chi-square tests (Fisher‘s exact tests when applicable), ttests, and Mann-Whitney U or Kruskal-Wallis tests for assessing mean rank differences in ordinal variables. A significance level of 0.05 was used to assess statistical significance.

Results General Characteristics of the Participants Participants provided information on the following demographic characteristics: epilepsy status, age, gender, educational level, employment status, marital status, living situation and living arrangements. A total of 225 of 338 people with epilepsy who had previously registered interest in participating in research completed a self-report questionnaire, giving a response rate of 66.6%. Participants were aged between 18 and 83 (mean = 47.6, SD = 14.7), and nearly two-thirds of the sample were female (64.9%). The most frequent categories for the remaining demographic characteristics were Caucasian (95.8%) for ethnic background, high school certificate (38.2%) for educational level, part-time (24.0%) for employment status, married (43.1%) for marital status, outright owner (34.2%) for living situation, and living with partner (43.6%) for living arrangements.

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Participants provided information regarding their experiences of living with epilepsy. The mean number of years they had had epilepsy was 24.9 (SD = 16.7), with a mean age at first seizure of 21.66 (SD = 17.4). Participants reported on the time taken to diagnose epilepsy following the first seizure, with time frames ranging from immediately to over 11 years. The most commonly reported length of time taken to diagnose epilepsy was between one month and one year (24.4%). A total of 47 people (20.9%) had undergone surgery to treat epilepsy. Participants provided information on the types of seizures they experienced, choosing as many as applicable from a list of 7 options: simple partial, complex partial, absence, tonic clonic, myoclonic, tonic and atonic seizures. More than half (58.2%) of participants reported experiencing tonic–clonic seizures. Absence, complex partial and simple partial seizures were reported by 35.6, 34.2, and 20% of participants, respectively. Only 8% reported other seizure types (e.g., myoclonic, atonic, and tonic), and 8.4% did not report any seizure type. The majority of participants experienced only one seizure type (51.1%), although 21.8% did report experiencing two seizure types, and 18.7% reported experiencing more than three seizure types. Of those who had experienced seizures in the past 12 months (56%), the majority reported 10 or fewer seizures per month (72.2%), although the frequency of seizures ranged from 1 in the past year to about 6480 (or about 540 per month).

Recognition of Initial Symptoms Participants were provided with a list of sixteen warning signs and initial symptoms of seizures and were asked whether they had experienced or noticed any of them prior to a seizure. The list included items such as funny feeling, anger, limb weakness and urge to defecate. One hundred and ninety-five (86.6%) of participants indicated that they experienced at least one symptom prior to a seizure. The most frequent symptom for the total sample was funny feeling (68.4%), followed by confusion (52.0%) and anxiety (45.8%). Males and females gave comparable responses across all symptoms, but there was a significant effect for age. Younger participants were more likely to report symptoms such as funny feeling, confusion, trembling, irritability, childish behaviour, anxiety, speech disturbance, headache, nausea, anger and limb weakness than older participants. Furthermore, people with epilepsy who stated that they experienced ‗no symptoms‘ prior to a seizure were older than those that experienced at least one symptom. A Kruskal-Wallis test was conducted to assess mean difference in number of symptoms given. The result was significant, with mean rank decreasing as age increased, indicating that younger groups reported higher number of symptoms than older groups, χ2(3, N = 220) = 19.28, P<0.05. There was also a significant difference in number of symptoms given by people with epilepsy in terms of complex partial seizures, with those who do experience complex partial seizures having a higher mean rank than those who do not experience complex partial seizures, U = 3767.5, P<0.05. Recognition of Trigger Factors Participants were provided with a list of 42 events or factors derived from the literature regarding self-report triggers of seizures and were asked to indicate whether they had experienced any of these events in association with a seizure in the past. Participants could choose as many as were appropriate for their circumstances. A total of 202 (89.8%) of

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participants experienced at least one seizure. The most frequent trigger for the total sample was tiredness (65.3%), followed by stress (64.0%) and sleep deprivation (55.1%). Analyses of age differences revealed that younger participants were more likely to report tiredness, sleep deprivation, cooking, stress, missing medication, medication change, television, illegal drugs, sexual intercourse, self-induced, heat/humidity, alcohol, work activity, and a feeling of low blood sugar as triggers of seizures compared with older participants. In addition, those people with epilepsy who did not report any triggers prior to seizure were older than those who reported at least one trigger. Analyses of gender differences revealed that males and females had similar distributions across each trigger, except for a feeling of low blood sugar, diet, fasting, touch, and female specific triggers (menstruation, pregnancy, and ovulation). The female- only triggers were relatively common, with 36% of females reporting menstruation, 15% reporting ovulation, and 14% reporting pregnancy as triggering a seizure. Menstruation was the seventh most common trigger for females. Females were also more likely than males to report a feeling of low blood sugar, diet and fasting triggers. Conversely, males were more likely than females to report touch as a trigger, and ‗no triggers‘. The number of triggers experienced by participants was analysed for gender and age differences. The number of triggers per participant ranged from 0 to 26 for females and 0 to 24 for males. Females reported a larger number of triggers (M = 8.04, SD = 5.87) compared with males (M = 6.13, SD = 5.31), a difference that was statistically significant, F(1, 216) = 5.68, P < 0.05. A Mann-Whitney test revealed a statistically significant difference in mean rank scores for number of triggers according to gender, with females reporting a higher number of triggers than males, U = 4214.5, P<0.05. A Kruskal-Wallis test was conducted to assess mean difference in age for number of triggers given. The result was significant, with mean rank decreasing as age increased, indicating that younger groups reported higher number of triggers than older groups, χ2(3, N = 214) = 27.93, P<0.05. Regression analyses revealed that age is significantly associated with number of triggers, with increasing age corresponding to a smaller number of triggers, = .062, t(225) = -2.18, P < .05. However, age at first seizure was also significantly associated with number of triggers, independently of age, = -.078, t(225) = -3.10, P < .05. For people with epilepsy, there were also mean rank differences in number of triggers reported for complex partial seizures. Those who experience complex partial seizures reported a higher number of triggers than those who do not experience complex partial seizures, U = 3465.5, p<0.05

Techniques to Stop Seizures Participants were provided with a list of 12 techniques that have been reported in the literature as self-report methods of stopping seizures and were asked whether they has used any of the techniques to avoid a seizure. A total of 157 (69.8%) participants had tried at least one technique in attempts to stop a seizure. The most common technique was resting (42.2%) followed by using medication (34.7%) and relaxation (33.8%). Those participants who tried medication, changing mood, sleeping, and distracting attention techniques were younger than those who did not. In addition, the younger the person was at the time of their first seizure, the more techniques they had tried to stop a seizure. The only difference between males and

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females was that females (40, 27.4%) were more likely to use the ‗distracting attention‘ technique than males (12, 15.2%), χ2(1, N = 225) = 4.30, P < 0.05. A Kruskal-Wallis test was conducted to assess mean difference in number of techniques given. The result was significant, with mean rank decreasing as age increased, indicating that younger groups reported higher number of techniques than older groups, χ2(3, N= 214) = 9.56, P<0.05 There was also a significant difference in number of techniques given by people with epilepsy in terms of complex partial seizures, with those who do experience complex partial seizures having a higher mean rank than those who do not experience complex partial seizures, U = 3636.5, P<0.05

Predicting and Aborting Seizures Participants were also asked a series of questions about their awareness of changes prior to seizures, triggering seizures and ability to stop a seizure. Of the 225 people with epilepsy, 143 (63.6%) indicated that they can tell if a seizure is about to occur. The demographic and living with epilepsy characteristics were compared to determine if any differences existed between those who could tell when a seizure was about to occur and those that could not. The only difference identified was for those experiencing complex partial seizures (72 people in total) who indicated yes for predicting seizures at a higher rate than expected (57 people), χ2( 1, N=202) = 4.54, P<0.05. Only 91 (40.4%) respondents indicated that family members could tell when a seizure was about to occur. The only statistically significant difference in yes and no responses was for surgery treatment for people with epilepsy. Those who had undergone surgery to treat epilepsy were more likely than expected to indicate that their family members could predict seizures (27 people. 12.0%), whereas those who had not undergone surgery were more likely than expected to indicate no family members could predict seizures (107 people, 47.6%), χ²(2, N=215) = 7.22, p<0.05. To determine whether participants experienced seizure precipitants, they were asked to respond to the question ‗are your seizures triggered by anything?‘ and ‗is there anything you can do to trigger a seizure?‘, and if ‗yes‘, what? A total of 147 (65.3%) people with epilepsy stated that their seizures were triggered by something, and 69 (30.7%) indicated no. In terms of triggering seizures, 79 (35.1%) said yes and 132 (58.7%) said no. Analysing difference in demographic characteristics and living with epilepsy characteristics revealed that there were differences in those that indicated their seizures were triggered by something and those that did not have seizures triggered by something. In terms of age groups, the younger groups were more likely to indicate that their seizures were triggered by something than the older groups, with 25 (11.1%) saying yes for the 30 and under age group, 63 (28.0%) saying yes for the 31-45 years age group, 39 (17.3%) saying yes for the 46-60 years age group, and finally, 19 (8.4%) saying yes for the 61 and over age group, χ²(3, n=214) = 33.95, P<0.05. Gender differences indicated that females were more likely to say yes (106; 47.1%) than males (41; 18.2%), χ²(1, N=216) = 10.74, P<0.05. In terms of living situation, those people paying for housing were more likely to say yes (92; 40.9%) than those not paying for housing (52; 23.1%), χ²(1, N=213) = 5.88, P<0.05. Those who had seizures triggered by something were younger, with a mean age of 19.27 years (SD = 15.12),

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compared to those who did not have seizures triggered by something who had a mean age of 26.24 years (SD = 19.73), t(104.64)=-2.55, P<0.05. To determine whether participants could stop their own seizures, they were asked to respond to the question ‗if you feel that you are about to have a seizure, is there anything you can do to stop it?‘, and if ‗yes‘, how? Of the 225 people with epilepsy, 60 (26.7%) stated yes and 140 (62.2%) stated no. Those who could stop a seizure were, on average, younger when their first seizure occurred, with a mean age of 16.53 years (SD = 14.7), compared to those who could not (M = 23.21, SD = 17.7), t(129.42) = -2.71, p<0.05.

Discussion This study has documented the experiences of warning signs, initial symptoms and precipitating factors of epileptic seizures, and self-control of seizures for a group of people with epilepsy from Victoria, Australia. The results indicate that the majority of the participants (86.9%) were aware of warning signs, and 89.9% had experienced seizures as a result of some factor or event. Furthermore, 65.3% of participants indicated that they had seizures that were triggered by something, although only 35.1% could trigger a seizure. A total of 69.8% of participants had tried at least one technique to stop a seizure. While 63.6% of participants indicated that they could tell that a seizure was about to occur, only 26.7% felt that they could do something to stop a seizure. Only 40.4% of participants reported that family members could predict seizures. The results demonstrate age and gender and seizure type effects for some symptoms, precipitants, and techniques to stop seizures.

Experiences of Warning Signs and Predicting Seizures The percentage of participants who experienced warning signs or symptoms prior to seizures is substantially higher than the percentages reported in other studies. For example, Shulze-Bonhage et al. (2006) found that only 7% (N=500) of out-patients from German epilepsy referral centres reported symptoms occurring more than 30 minutes in advance of seizures. Similarly, Hughes et al. (1993) found that only 29% (N=128) of patients in a US Epilepsy Clinic reported premonitory symptoms 30 minutes in advance of seizure activity. Rajna et al. (1997) found that 46.6% (N=562) of patients at various epileptic care institutions in Hungary experienced warning signs and initial symptoms, but allowed a more lenient cut off time of five minutes prior to seizure. Different rates across studies may be attributed to the different sampling methods used, such as the population of people with epilepsy measured, the data gathering technique, and nomenclature of symptoms, all of which vary across studies. The most pressing issue is the time frame allowed by researchers to distinguish between symptom and seizure, given that some premonitory symptoms are in fact seizures (e.g. auras as a focal seizure). EEG scans have revealed that some premonitory symptoms are actually seizures (e.g. Litt and Echauz, 2002), but there remains to be an agreed upon time frame or classification system that can differentiate seizures from symptoms for patients in non-clinical contexts. However, it is

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Jaya Pinikahana and Joanne Dono

possible that the difference between a premonitory symptom and focal seizure may be arbitrary in terms of a patient‘s response to the situation. Despite the wide-ranging results across studies regarding the prevalence of warning symptoms, the most common symptoms reported in the studies remain similar. Indeed, the current study demonstrated a similar finding to that of Hughes et al. (1993). From the list of 14 possible symptoms presented in the current study, the most common were funny feeling, confusion, anxiety and irritability, compared to Hughes et al. finding that irritability, depression, headache, funny feeling and confusion were the most common. Similar common responses in other studies were irritability and confusion (e.g. Lee and No, 2005).

Experiences of Seizure Precipitants and Triggers The percentage of respondents indicating that they experienced at least one of 42 factors or events prior to a seizure (89.8%) was higher than the percentage of participants that indicated that their seizures were triggered by something (65.3%). A much lower percentage indicated that they could trigger a seizure (35.1%). It is possible for an individual to report an event that was associated with a seizure, even if it occurred only once, but not necessarily consider the event a trigger because he or she has not had a seizure after every such event. Thus, the difference between recognizing an event prior to a seizure and identifying specific triggers may be related to the consistency of the association between trigger and seizure. An attempt to measure the frequency of association between an event and a seizure was not successful, largely because of the highly variable nature of seizure activity for each individual. More exploration is needed into the participants‘ perceptions of the consistency of seizures relative to exposure to a precipitant factor. The finding that a high proportion of participants experienced at least one factor (from the list of 42) prior to a seizure is consistent with other studies that had few restrictions on classification of seizure precipitants (e.g. Aird and Gordon, 1993; da Silva Sousa et al., 2005; Fisher et al., 2000; Hayden et al., 1992; Løyning et al., 1993; Spatt et al., 1998; Spector et al., 2000). Although, there are a number of studies that have reported lower rates of participants reporting at least one seizure precipitant (about 50-65%) (e.g. Cull et al., 1996; Dawkins et al., 1993; Fang et al., 2008; Frucht et al., 2000; Hart and Shorvon, 1995; Nakken et al., 2005; Sperling et al., 2008). The variable rates across studies may be due to methodological differences in terms of sampling (e.g. inclusion criteria, location) and data collection (e.g. interviews or questionnaires). Of note, the current study and Hayden et al.‘s findings, the only other Australian study to examine precipitant factors in detail, are similar; they found that 81% of respondents could identify at least one trigger for their seizures (from a list of 14), with stress/emotion, fatigue and lack of sleep given as the most common triggers. Furthermore, the leading triggers of tiredness, stress and sleep deprivation from the current study were also similar to those identified in most of the previously mentioned studies. Consistent with many other studies, the importance of stress as a seizure precipitant is evident in the current study, with a high proportion of participants indicating that they have experienced seizures associated with stress. Indeed, stress has long been implicated in seizure activity (e.g. Currie et al., 1971; Gastaut and Tassinari, 1966; Temkin and Davis, 1984). Additional evidence of the role of stress is also available from studies using a predictive methodology (rather than retrospective). For example, Temkin and Davis (1984) monitored

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11

daily perceived stress levels and seizure activity of patients with epilepsy over a period of three months and found that seven of the twelve patients showed a statistically significant association, even after other potentially confounding physiological factors were taken into account. Bosnjak et al., (2002) compared the occurrence of epileptic seizures in children from war affected areas of Croatia with children from non-war affected areas, and found that there was a higher frequency of seizures for children from war affected areas. Therefore, there is predictive evidence linking stress and seizures, and people are subjectively aware of how stress can trigger a seizure, suggesting that stress reduction techniques may be useful in controlling seizures in conjunction with other treatment methods.

Experiences of others Predicting Seizures While the current study did find that significant others (e.g. family members) were aware of changes in the person with epilepsy prior to a seizure, the results indicated that only 40.4% of family members detected any change. To date, little research exists that explores others‘ perceptions of seizure precipitants and warning signs. One of the difficulties for others‘ predicting seizures is that they can only observe outward appearances (e.g. involuntary body movements, speech changes), whereas a lot of the warning signs described by people with epilepsy are internal or emotional changes (e.g. funny feeling, anxiety). In addition, the person with epilepsy would have to be monitored very closely for significant periods of time, meaning that those associated with young children and patients with more severe, or difficult to control, forms of epilepsy are most likely to notice changes. Support for this hypothesis comes from the finding that those who have undergone surgery treatment for epilepsy reported that family members could predict seizures at rates significantly higher than expected compared to those who had not undergone surgery, assuming that surgery treatment is indicative of difficult to control epilepsy.

Experiences of Self Control Relating to Seizures Overall, only 26.7% of the respondents from the current study indicated that they could do something to stop a seizure. Other studies have reported rates of seizure self-control of about 50% (see Cull et al. 1996; Lee and No, 2005), but the results of the current study appear to be comparable to Rajna et al. (1997), who found that about 20% of patients tried to inhibit seizures, and da Silva Sousa et al. (2005) who found that 23% of patients could avoid seizures. In each of the studies on self-control of seizures, warning signs and precipitant factors were reported by over 50% of participants. The techniques used by participants in the current study, such as lying down, and concentrating on something else were similar to those reported by Cull et al. and Lee and No, although taking extra epilepsy medication was not mentioned as a technique in any of the other studies. A much larger percentage of participants indicated that they had tried at least one technique (from a list of 12) to stop a seizure (69.8% of people with epilepsy and 56.4% of carers), indicating that techniques to inhibit seizures are used more widely than previously acknowledged. It may be the case that participants have used these techniques to gain a sense of control over their condition, to limit danger associated with seizures, or by instruction from

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Jaya Pinikahana and Joanne Dono

their neurologist. Care must be taken in advocating the use of more self-control techniques relating to seizure activity because there is a danger that they are accompanied by an increase in stress and anxiety relating to trying to predict when a seizure is about to occur, thus provoking a seizure if stress is a precipitant. Haut et al. (2007a) found that a self-prediction variable accounted for anxiety and stress in a model testing the increased likelihood of a seizure. Further exploration of techniques to stop seizure and the psychological impact of such methods is necessary before recommendations can be made regarding these practices.

Differences due to Age, Gender and Seizure Characteristics Demographic characteristics such as age and gender have received only limited attention in studies exploring warning signs, symptoms and precipitants of seizures and the results are inconsistent. For example, while Sperling et al. (2008) found no gender effects for seizure precipitants, Spatt et al. (1998) found that the only gender difference for seizure precipitants was for alcohol intake and Frucht et al. (2000) found that more females reported at least one precipitant compared to males. Similar to Frucht et al. (2000), the results of the current study demonstrated that females report a larger number of triggers than males. Further examination of the specific triggers suggests that food is an important gender difference, with females more likely to report a feeling of low blood sugar, diet, and fasting as triggers of seizures than males. Conversely, males were more likely to report touch as a trigger compared with females. The only gender difference in techniques to stop a seizure was distracting attention, with females more likely than men to have tried this method. Female-only symptoms and triggers were relatively common in the current study, and occurred at rates similar to those reported in a study by da Silva Sousa et al. (2005). However, symptoms and triggers that were not gender-specific, such as funny feeling, tiredness, and stress, featured more prominently. In the current study, males and females showed similar responses across most of the questions, except in relation to triggers and seizures. Females reported rates higher than expected for having seizures triggered by something compared to males, and also reported experiencing a higher number of triggers prior to seizures than men. The reason for this finding is possibly due to females recognising menstruation and pregnancy as triggers, and there is no equivalent trigger for males. However, it is important to note that the overall sample had significantly more females than males responding, leading to unequal group comparisons that can potentially distort results. Of the studies that compared age differences, no effects were found (e.g. da Silva Sousa et al., 2005; Frucht et al., 2000). In contrast, the current study demonstrated that age group differences were evident for people with epilepsy across a number of conditions, with younger people more likely to experience the funny feeling, confusion, trembling, irritability, childish behavior, anxiety, speech disturbance, headache, nausea, anger, and limb weakness symptoms; the tiredness, sleep deprivation, cooking, stress, missing medication, medication change, television, illegal drugs, sexual intercourse, self-induced, heat/humidity, alcohol, work activity, and feeling of low blood sugar triggers; and the medication, changing mood, sleeping, and distracting attention techniques, compared with older participants. Furthermore, younger participants were more likely to report a larger number of symptoms and triggers than older participants, and more likely to indicate yes to having a seizure triggered by something and to having a family member predict seizures. It is possible that these age group

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differences can be attributable to increased knowledge about seizures and epilepsy, improved methods of informing patients about epilepsy, or differences in how health is managed, with people in the younger age groups less reliant on medical experts and more willing to be selfdirected in their management of the condition. However, the younger the age at which a person has her or his first seizure, the more techniques he or she has tried to stop a seizure; chronological age becomes a less important criteria. Therefore, a possible interpretation of these results is that the subjective experience of controlling epilepsy is different for those who have seizures at a young age than for those who have them later in life. There does not appear to be a great deal of difference in the experiences of pre-seizure activity according to the type of seizure that participants in the current study had. The only statistically significant difference found for people with epilepsy was for those who had complex partial seizures compared to those who did not. Those who had complex partial seizures reported higher than expected rates of being able to tell that a seizure was about to occur. They were also more likely to report higher number of symptoms, triggers and techniques. It is possible that because the individual usually maintains some awareness while experiencing a complex partial seizure, they are more able to recognise symptoms, warning signs and triggers, and feel that there is something they can do to stop it. Other research has had mixed findings regarding subjective experiences of patients with different seizure types. Whereas Hughes et al., (1993) found that all participants who experienced premonitory symptoms had partial seizure disorders; Rajna et al. (1997) demonstrated that warning signs were evident in people with a range of different seizure types. There is limited evidence of differences between localized and generalized seizure types for seizure precipitants, with Frucht et al. (2000) finding that cryptogenic partial epilepsy and temporal lobe epilepsy patients reported a higher rate of at least one seizure precipitant than patients with cryptogenic generalized epilepsy. Nakken et al. (2005) found that there were similar levels of stress and tiredness precipitants reported for generalised and localized seizures, but did find that those with generalized seizures were more sensitive to sleep deprivation and flickering light. Cull et al. (1996) argued that it was too difficult to compare seizure types as many of their participants exhibited multiple types, including both generalized and localized. A similar finding was evident for the current study, with less than 50% reporting only one seizure type. Another concern is that older people are less familiar with the term ‗complex partial seizure‘ so it may be under-reported.

Limitations This study has some limitations that need to be considered when interpreting the data. One issue is that the data was based only on anonymous self-reporting, thus there was no attempt to verify the medical aspects of epilepsy (e.g. diagnosis, seizure types). Self-report data is necessary for understanding the perceptions and experiences of people with epilepsy, and is common in this type of research, but other studies have generally taken place in clinics where medical data was available. Future research would benefit from a more detailed account of the participants medical history. Another issue is that the sample was restricted to people over 18, and people with a cognitive impairment may have had difficulty completing the questionnaire, thus there are important segments of the population of people with epilepsy that are not represented by the current study. In addition, the sample was comprised of people

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Jaya Pinikahana and Joanne Dono

who have been in contact with the Epilepsy Foundation of Victoria, a consumer led organization that provides information and counselling support to people affected by epilepsy, so it is possible that this group of participants has more knowledge of seizures and epilepsy than the general population of people who have epilepsy.

Conclusion The study has provided documentation of a range of pre-seizure experiences for people with epilepsy in Victoria, Australia and has demonstrated that knowledge and awareness of symptoms, triggers, and techniques to stop seizures are generally high. Furthermore, the study has shown that there are differences due to age and gender that should be given more consideration when disseminating information about epilepsy. The results of this study and many of the others conducted around the world, demonstrate a remarkable similarity in common warning signs (e.g. funny feeling), seizure precipitants (e.g. stress) and techniques to stop seizures (e.g. relaxation). Furthermore, the large proportions of people with epilepsy who reported knowledge of warning signs, who had seizures triggered by something, and to a lesser extent could stop seizures demonstrates that pre-seizure awareness is high. Indeed, the large proportion of participants who reported trying at least one technique to avoid a seizure suggests that people with epilepsy are already using information from warning signs and experiences with seizure precipitants to attempt to control the condition. The identification of warning signs and initial symptoms of seizures, and of precipitating seizure factors may facilitate the development of specific counter measures that supplement existing epilepsy therapies and interventions. It is evident that without information that provides an accurate profile of warning signs, initial symptoms, and precipitants of seizures, any preventive strategies can not be properly formulated. The findings from the current study will assist in the development of pre-emptive intervention based on patient self-report, such as reducing exposure to seizure precipitants. It is important for future research to establish more detailed information about seizure precipitants so that limiting exposure to such precipitants are not unnecessary affecting lifestyle, and to explore the side effects of an increasing focus on seizure prediction and control (e.g. increased stress and anxiety). The benefit of this research is that the information can be used to inform health professionals of the subjective experiences of seizures, and to begin to put into practice strategies to reduce seizure risk, and increase preventative methods of seizure control.

References Aird, R. B. (1983). The importance of seizure-inducing factors in the control of refractory forms of epilepsy. Epilepsia, 24, 567-582. Aird, R. B., and Gordon, N. S. (1993). Some excitatory and inhibitory factors involved in the epileptic state. Brain and Development, 15, 299-304. Antebi, D., and Bird, J. (1993). The facilitation and evocation of seizures. A questionnaire study of awareness and control. The British Journal of Psychiatry, 162, 759-764.

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Asadi-Pooya, A. A., and Sperling, M. R. (2007). Do foods precipitate seizures? A crosscultural comparison. Epilepsy and Behavior, 11(3), 450-453. Aziz, H., Ali, S. M., Frances, P., Khan, M. I., and Hasan, K. Z. (1994). Epilepsy in Pakistan: A population-based epidemiologic study. Epilepsia, 35(5), 950-958. Bosnjak, J., Vukovic-Bobic, M., and Mejaski-Bosnjak, V. (2002). Effect of war on the occurrence of epileptic seizures in children. Epilepsy and Behavior, 3(6), 502-509. Cull, C. A., Fowler, M., and Brown, S. W. (1996). Perceived self-control of seizures in young people with epilepsy. Seizure, 5, 131-138. Currie, S., Heathfield, K. W. G., Henson, R. A., and Scott, D. F. (1971). Clinical course and prognosis of temporal lobe epilepsy: a survey of 666 patients. Brain 94, 187-220. da Silva Sousa, P., Lin, K., Garzon, E., Sakamoto, A. C., and Yacubian, E. M. T. (2005). Self-perception of factors that precipitate or inhibit seizures in juvenile myoclonic epilepsy. Seizure-European Journal of Epilepsy, 14(5), 340-346. Dawkins, J. L., Crawford, P. M., and Stammers, T. G. (1993). Epilepsy: A general practice study of knowledge and attitudes among sufferers and non-sufferers. British Journal of General Practice, 43, 453-457. Fang, P. C., Chen, Y. J., and Lee, I. C. (2008). Seizure precipitants in children with intractable epilepsy. Brain and Development, 30(8), 527-532. Fenwick, P. B. C., and Brown, S. W. (1989). Evoked and psychogenic epileptic seizures. Acta Neurologica Scandinavica, 80, 535-540. Fisher, R. S., Vickrey, B. G., Gibson, P., Hermann, B., Penovich, P., Scherer, A., et al. (2000). The impact of epilepsy from the patient‘s perspective I. Descriptions and subjective perceptions. Epilepsy research, 41(1), 39-51. Frucht, M. M., Quigg, M., Schwaner, C., and Fountain, N. B. (2000). Clinical research: Distribution of seizure precipitants among epilepsy syndromes. Epilepsia, 41(12), 15341539. Gastaut, H., and Tassinari, C. A. (1966). Triggering mechanisms in epilepsy. Epilepsia, 7, 85125. Gowers, W. R. (1885). Epilepsy and other chronic convulsive disorders: New York, William Wood and Co. Hart, Y. M., and Shorvon, S. D. (1995). The nature of epilepsy in the general population. I. Characteristics of patients receiving medication for epilepsy. Epilepsy Research, 21, 4349. Haut, S. R., Hall, C. B., LeValley, A. J., and Lipton, R. B. (2007a). Can patients with epilepsy predict their seizures? Neurology, 68, 262-266. Haut, S. R., Hall, C. B., LeValley, A. J., and Lipton, R. B. (2007b). Seizure occurrence: Precipitants and prediction. Neurology, 69(20), 1905-1910. Hayden, M., Penna, C., and Buchanan, N. (1992). Epilepsy: Patient perceptions of their condition. Seizure, 1, 191-197. Hughes, J., Devinsky, O., Feldmann, E., and Bromfield, E. (1993). Premonitory symptoms in epilepsy. Seizure, 2, 201-203. Jarvie, S., Espie, C. A., and Brodie, M. J. (1993). The development of a questionnaire to assess knowledge of epilepsy: 2--knowledge of own condition. Seizure, 2, 187-193. Lee, S. A., and No, Y. J. (2005). Perceived self-control of seizures in patients with uncontrolled partial epilepsy. Seizure, 14, 100-105.

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Litt, B., and Echauz, J. (2002). Prediction of epileptic seizures. The Lancet Neurology, 1(1), 22-30. Løyning, Y., Bjørnæs, H., Larsson, P. G., Areng, S., Aronsen, R., Bragason, A., et al. (1993). Influence of psychosocial factors on seizure occurrence. In D. I. Mostofsky and Y. Løyning (Eds.), The Neurobehavioral Treatment of Epilepsy (pp. 253-264). Hillsdale: Lawrence Erlbaum Associates. Millett, C. J., Johnson, A. L., Thompson, P. J., and Fish, D. R. (2001). A study of the relationship between participation in common leisure activities and seizure occurrence. Acta Neurologica Scandinavica, 103, 300-303. Mula, M. (2007). Correspondence: Can patients with epilepsy predict their seizures? Neurology, 69, 494. Nakken, K. O., Solaas, M. H., Kjeldsen, M. J., Friis, M. L., Pellock, J. M., and Corey, L. A. (2005). Which seizure-precipitating factors do patients with epilepsy most frequently report? Epilepsy and Behavior, 6, 85-89. Rajna, P., Clemens, B., Csibri, E., Dobos, E., Geregely, A., Gottschal, M., et al. (1997). Hungarian multicentre epidemiologic study of the warning and initial symptoms (prodome, aura) of epileptic seizures. Seizure, 6, 361-368. Rajna, P., Sólyom, A., Mezofi, L., and Vargyai, E. (2008). Are there real unprovoked/unprecipitated seizures? Medical Hypotheses, 71, 851-857. Schulze-Bonhage, A., Kurth, C., Carius, A., Steinhoff, B. J., and Mayerc, T. (2006). Seizure anticipation by patients with focal and generalized epilepsy: A multicentre assessment of premonitory symptoms. Epilepsy Research, 70, 83-88. Spatt, J., Langbauer, G., and Mamoli, B. (1998). Subjective perception of seizure precipitants: results of a questionnaire study. Seizure, 7, 391-395. Spector, S., Cull, C., and Goldstein, L. H. (2000). Seizure precipitants and perceived selfcontrol of seizures in adults with poorly-controlled epilepsy. Epilepsy Research, 38(0), 207-216. Spector, S., Cull, C., and Goldstein, L. H. (2001). High and low perceived self-control of epileptic seizures. Epilepsia, 42(4), 556-564. Sperling, M. R., Schilling, C. A., Glosser, D., Tracy, J. I., and Asadi-Pooya, A. A. (2008). Self-perception of seizure precipitants and their relation to anxiety level, depression, and health locus of control in epilepsy. Seizure, 17(4), 302-307. Tan, J. H., Wilder-Smith, E., Lim, E. C. H., and Ong, B. K. C. (2005). Frequency of provocative factors in epileptic patients admitted for seizures: A prospective study in Singapore. Seizure, 14(7), 464-469. Temkin, N. R., and Davis, G. R. (1984). Stress as a risk factor for seizures among adults with epilepsy. Epilepsia, 25(4), 450-456. Unsworth, C. (1999). Living with epilepsy: Safety during home, leisure and work activities. Australian Occupational Therapy Journal, 46(3), 89-98.

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter II

Indicators of the Social Consequences of Epilepsy Kevin M. Brown

Deakin University, Victoria, Australia

Abstract The chapter takes as its starting point the declaration of the World Health Organisation (WHO) that: ―…the social consequences of epilepsy are often more difficult to overcome than the seizures themselves.‖ (WHO, 2001, 1). The need for work that charts these consequences is as vital today, almost a decade after the declaration and the chapter adds to this debate by presenting preliminary data from Australia that details some of the social consequences. In addition, the chapter discusses the nature and possible role that stigmatization plays in the reproduction of these conditions. Australian data are presented here that for the first time estimate the proportion of the population affected by epilepsy in an inclusive sense, that is provide combined figures for both those suffering epilepsy and their household members. While the focus is on contemporary Australian society, many of the issues raised will be of direct relevance to other countries and where possible comparative research has been cited. It is argued that the key issues for the better understanding of the realities and determinants of living with epilepsy can be set out in three major research strands: the need for (more) accurate prevalence data; the fuller use of existing official statistics/data sources and quality of life issues. The need for accurate prevalence data is obvious for without this we are dealing with a nonquantified or only partly-quantified approximation. Designing and implementing research can be lengthy and costly particularly when the populations studied are national or regional. It is important to ensure that existing official statistics and other available data sources have been exhausted in terms of epilepsy related issues. Reidpath et al (2005, 469) discussed the effects of illness-related stigma in terms of at least three dimensions. Firstly, stigmatised groups may suffer direct health consequences from the experience of living with that stigmatisation. Secondly, the fear of experiencing stigma may self Correspondence: Dr Kevin M Brown, Senior Lecturer, Sociology, Faculty of Arts and Education, Deakin University, 221 Burwood Highway, Burwood, Victoria, Australia 3125, Phone 9244 3974, Fax 92446755. Email: [email protected].

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Kevin M. Brown exclude them from employment, healthcare and other opportunities. In this regard, Fife and Wright (2000) claim that that the perceived negative reactions of others are the primary determinant in psychological adjustment to illness. This in turn echoes Scambler‘s earlier development of the concept of ‗felt stigma‘ in his discussion of epilepsy (Scambler, 1989; Scambler and Hopkins, 1986). Thirdly, actual discrimination by others towards the subject may be experienced (Busza, 2001). In Scambler‘s terms this relates to ‗enacted‘ stigma (Scambler, 1989).

Introduction It is almost a decade since the World Health Organisation (WHO) declared that: ―…the social consequences of epilepsy are often more difficult to overcome than the seizures themselves.‖ (WHO, 2001, 1). Despite the continuing work of dedicated organisations and individuals to both highlight and combat these inequities epilepsy has yet to be brought out of it‘s shadow existence in terms of public knowledge and perceptions. There is therefore a vital need for data that can highlight the economic, social and psychosocial conditions that characterise the lives of people living with epilepsy. This is not of course restricted to those suffering the direct burdens of the condition but includes those who are their carers and partners. This chapter attempts to contribute to this debate by both setting out preliminary data relating to such conditions of life in Australia and discussing the nature and possible role that stigmatization plays in the reproduction of these conditions. The argument presented is by necessity exploratory and related to what is most needed in research terms rather than being a systematic or comprehensive overview. Nevertheless Australian data are presented here that for the first time estimate the proportion of the population affected by epilepsy in an inclusive sense. It is hoped that this can provide a basis from which more thoroughgoing analyses can progress. While the focus here is on contemporary Australian society, many of the issues raised will be of direct relevance to other countries and where possible comparative research has been cited. Today‘s key issues for the better understanding of the realities and determinants of living with epilepsy can arguably be set out in three major research strands: the need for (more) accurate prevalence data; the fuller use of existing official statistics/data sources and quality of life issues.

a. The Need for Accurate Prevalence Data The need for accurate prevalence data is obvious for without this we are dealing with a non-quantified or only partly-quantified approximation. It is clear that at the present time there exists no reliable statistic on epilepsy prevalence in Australia and the range of estimates used is largely a reflection of applying differing overseas experiences. We should also bear in mind that it is not only people with epilepsy who are living with the social consequences of their illness but also their immediate family and/or carers. In calculating or estimating numbers of Australians living with epilepsy, an accurate method is required to take account of both groups.

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b. Using Existing Official Statistics/Data Sources Designing and implementing research can be lengthy and costly particularly when the populations studied are national or regional. It is important to ensure that existing official statistics and other available data sources have been exhausted in terms of epilepsy related issues.

c. Quality of Life Issues Reidpath et al (2005, 469) discussed the effects of illness-related stigma in terms of at least three dimensions. Firstly, stigmatised groups may suffer direct health consequences from the experience of living with that stigmatisation. Secondly, the fear of experiencing stigma may self-exclude them from employment, healthcare and other opportunities. In this regard, Fife and Wright (2000) claim that that the perceived negative reactions of others are the primary determinants in psychological adjustment to illness. This in turn echoes Scambler‘s earlier development of the concept of ‗felt stigma‘ in his discussion of epilepsy (Scambler, 1989; Scambler and Hopkins, 1986). Thirdly, actual discrimination by others towards the subject may be experienced (Busza, 2001). In Scambler‘s terms this relates to ‗enacted‘ stigma (Scambler, 1989).

Data Sources and Results This section considers the above issues in relation to the Australian context and focuses on the areas of prevalence, employment and self-reporting of epilepsy as a methodological issue with implications for research validity and reliability.

a. Prevalence Data and Official Statistics The Australian National Health Survey data collected by the Australian Bureau of Statistics was investigated. Based on a regular national random sample one question in the survey asked respondents if they have epilepsy. This data source appears not to have been used for epilepsy related research. Analysis of data sets from National Health Surveys 2001 and 2004-5 produced the following:

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Kevin M. Brown Table 1. Different estimations of the prevalence of epilepsy in Australia by individual and total household members (with denial and unaware correction rates applied)

Source

Number PWE

Prevalence %1

Rate/ population

Prevalence %

Rate/ population

1/147

Total PWE + people in household 2 419 818

NHS 2004-5

133 700

0.68%

2.13%

1/47

NHS 2004-5 ‗false negative - denial‘ correction3

174 543 4

0.89%

1/113

548 065

2.78%

1/36

NHS 2004-5 ‗false negative -unaware +denial rate‘ correction 5

268 473 6

1.36%

1/737

843 005

4.3%

1/23

Source: National Health Survey 2001; 2004-5 – Confidentialised Unit Record Data (CURF) used. 1 Total population, Australia in NHS estimates = 19,681,500 (NHS, 2004-5). 2 Ratio of PWE to household members based on analysis of NHS 2001 (Brown (EFV), unpublished) = 1:2.14. Total PWE + people in household = Number PWE * 3.14. 3 Beren et al. (1985) report the false negative response rate within epilepsy reporting in epidemiological studies as 0.234 [or 23.4% underreporting]. 4 (133 700/76.6) * 100. 5 Zielinski et al. (1988) report a false negative rate of 0.268 for cases of epilepsy where the respondent was unaware of the disorder and/or diagnosis. 6 (133 700/49.8) * 100. 7 cf. Banks et al. (1995, 39) give an adjusted rate for Australia: ―…as many as one in 50.‖

Table 1 reports results extrapolated from the Australian National Health Survey 2004-5 and also uses results from the 2001 survey to calculate column 4 totals (numbers of people with epilepsy plus members of their households). The table provides three sets of estimates of prevalence and gives estimated total numbers of persons in columns one and five. A baseline estimate of 133,700 people with epilepsy in Australia in 2004-5 is given based on the number and ratio of respondents self-reporting epilepsy in the survey as compared to the total Australian population at that time (19,681,500). This gives a prevalence of 0.68% or 1 in every 147 Australians. Analysis of the 2001 Australian national Health Survey indicated the mean of household members living with people with epilepsy (and excluding the person with epilepsy from the calculation) was 3.14. Applying this to the 2004-5 data gave a combined estimate of people living with epilepsy (both those with epilepsy and those in the household) of 419, 818 persons (133,700 * 3.14). expressed as prevalence this combined figure was 2.13% or 1 in every 47 Australians either having the condition of epilepsy or living in the household of a person with epilepsy. Rows 2 and 3 of table 1 present correction estimates based on two factors. The first was discussed by Beren (1985) who showed that there was just over 23% underreporting of epilepsy in epidemiological studies. Applying this rate to the data in row 1 of Table 1 increases estimates to a population rate of 1 in 113 Australians with the condition of epilepsy in 2004-5 and 1 in 36 Australians either having the condition of epilepsy or living in the household of a person with epilepsy.

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The second factor implicated in possible underreporting of epilepsy was outlined by Zielinski et al. (1988) who reported that there was a false negative rate of 0.268 for cases of epilepsy where the respondent was unaware of the disorder and/or diagnosis. When this corrective is added to that discussed above in row 3 of Table 1, it gives an estimated population rate of 1 in 73 Australians with the condition of epilepsy in 2004-5 and 1 in 23 Australians either having the condition of epilepsy or living in the household of a person with epilepsy. Clearly these data offer a possible range for epilepsy prevalence in Australia and are the results of exploratory research. However in the absence of alternative robust statistics they delineate the ground upon which the work of epilepsy awareness and policy debates need to be situated. For the first time in Australia the research has provided evidence based estimates not only of the number of people living with epilepsy but also the number of people living in their households.

b. Employment Participation in the labor market is a crucial indicator of life chances and preliminary analysis of employment patterns from the 2001 Australian National Health Survey indicate a marked difference between those with epilepsy and the remainder of the labor market participants. Table 2 sets out the percentage differences between categories of the labor market and epilepsy status. The largest percentage difference (13%) was between those without epilepsy employed full-time (43%) and those with epilepsy employed full-time (30%). While this difference almost disappeared for those employed part-time, the proportion of people with epilepsy looking for work (10%) was more than twice that for those not suffering the condition (4%). A majority of those with epilepsy (44%) were outside the labor force compared to 35% of those who did not have the condition. Generally these data fit the patterns seen in a large European study (RESt, 2000, 1000) where the per cent ―better employed‖ for people with epilepsy was between 5% (Italy) to 25% (England) less than that for all others. Clearly a simple bivariate analysis such as that given in Table 1 may mask interrelations between variables such as age, gender and economic status. In order to control for some of these interactive effects, a logistic regression was carried out on the data and reported in Table 3 below. Table 2. Employment categories by self-reported epilepsy status, Australia 2001 (abridged table showing percentages only)

Does not have epilepsy Has epilepsy

Employed full time

Employed part time

43.2% 29.5%

Source: National Health Survey 2001.

Not in labour force 34.5%

Total

18.4%

Unemployed looking for work 4%

16.7%

9.6%

44.3%

100%

100%

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Kevin M. Brown Table 3. Logistic regression analysis showing impact of demographic variables on employment status, Australia 2001 Variable Self reported epilepsy Female Level of psychological distress (4 cats lo-hi) Age (5 year ordinal bands after 16 years)) Location (metro/provincial/remote) Birthplace

Odds ratio 3.42** 2.76** 1.49** 1.48** ns ns

**p< 0.01. n=26 862. ns= not significant. Source: National Health Survey 2001, EFV analysis.

Logistic regression indicates the relative importance of predictor variables for a categorical dependent variable (employed/not employed) when all others are held constant. Four variables were found to be significant predictors of the likelihood of a person being not employed. In order of predictive power the predictors were: having epilepsy (self-reported); being female; level of psychological distress (measured by the Kessler scale and categorized as ‗low‘, ‗moderate‘, ‗medium‘ and ‗high‘ and age (years). This is expressed in Table 3 in terms of odds ratios. The odds of a person with self-reported epilepsy being out of employment were 3.42 times higher than for those without self-reported epilepsy. Females were 2.76 times more likely to be outside employment than males. Moving up one category in the four psychological distress categories based on the Kessler scale resulted in that person being 1.49 more likely to be out of employment. For each age band of five years (after 16 yrs.), the odds of not being in employment were increased by 1.48.

c. The Issue of Self-Reporting Self-reporting of epilepsy (for example, ticking the box or selecting the answer alternative from a list provided by an interviewer as in the case of some the above examples) runs into general and specific validity issues. The general issues are to do with reporting bias involving respondent's ideas of social desirability i.e. not wanting to appear 'different' or 'unworthy'. This has been debated in relation to questions about at-risk behaviours to unpopular attitudes and everything in-between. Chronic illness reporting would certainly be included here. Specific issues involve the possibility of the stigma associated with epilepsy causing underreporting and the possibility that people with various levels of controlled epilepsy might not report it as a condition they any longer/presently have (that is, a confusion between the symptoms and the underlying condition). All of these factors could tend to cause underreporting. Ultimately these problems can only be overcome by asking more detailed survey questions.

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An interesting US study (in light of this discussion) compared (cross-checked) the answers given in a telephone survey of three common health conditions to the respondent's medical records in order to gauge the nature of self-reporting (Martin et al., 2000]. The respondents were asked if a doctor or health professional had ever told them that they had diabetes, hypertension and/or hypercholesterolemia and their answers checked against their own medical records. 83% diagnosed with hypertension reported that they had been told they had hypertension. The figures were 73% for diabetes and 59% for hypercholesterolemia (n=599). Even though the authors conclude that:’ self-reports are reasonably accurate for certain chronic conditions‘, it seems clear that a level of only 59% for hypercholesterolemia means that this survey would have underreported that condition by 41% and that if this was caused by any perception of stigma attached relative to diabetes and hypertension, then the levels attached to epilepsy will likely be much greater.

Stigmatisation The classic definition of stigma comes from Goffman (1963, 12-13) who argues that the imputation of a ‗virtual social identity‘ over a notional ‗actual social identity‘ constitutes stigma in so far as the process differentiates the stranger/other by reference to any attribute deemed ‗deeply discrediting.‘ Reidpath et al (2005, 470-471) follow Link and Phelan (2001) in arguing that a tension exists in the literature between universalising approaches to stigma on the one hand and recognition of the need to consider context on the other. Hence, Link and Phelan specifically define stigma contextually [stigma exists]: …when elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that allows them.‘ (Link and Phelan, 2001, 367).

The ways that disease and illness are socially constructed are therefore key constituents of belief systems that may be stigmatizing (Rosenberg, 1987: 5). Within a focus on illness, Herek (1990) puts forward five key dimensions of stigma that are important for the present discussion: disruptiveness; aesthetic; origin; course and peril. 1 Higher levels of stigma are hypothesised to result from each dimension as follows:     

The greater the extent that the illness sufferer is perceived as interfering with the normal flow of social interactions (disruptiveness); The more the illness invokes perceptions of being repellent or ugly (aesthetic); Perceptions that the illness originated because of some action or inaction on behalf of the sufferer (origin); A terminal illness may provoke more stigma than one that is not terminal (course); Perceptions that an illness sufferer may put others in direct physical, social or moral danger (peril).

1 A sixth dimension of concealability is less relevant for this discussion as most or all (chronic illness) conditions are capable of being concealed to a large extent for all or a part of their progression. Indeed, the lack of a visible marker forms part of some definitions of chronic illness (Walker, 1999, 28-29). As set out below in the section on the construction of indicators of affective meaning, Herek‘s model proves to be useful in resolving part of the move from the abstracted category of chronic illness to more concrete questionnaire items.

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A range of stigmatisation may therefore result from combinations of these dimensions whereby any condition can be more or less stigmatised according to its position within the dimensional matrix. This focuses attention on affective mechanisms of stigma directed towards chronic illnesses while retaining space for variability according to the (virtual and actual) specificity of the conditions. Stigma is a pervasive influence on disease and responses of nations, communities, families, and individuals to illness. Too little research has been done in recent years to better understand the pathogenesis and implications of stigma, how beliefs are generated, perpetuated, and translated into behaviours, and the cost of stigma to individuals, families, communities, and nations. The sense that legislation and education against stigma is sufficient may explain the shortage of interest in research in this field. (Keutsch et al., 2006, 525-527 emphasis added)

The literature charting the effects of stigma on people living with epilepsy or other chronic illnesses is largely based outside Australia (for example: Gray, 1993; Hopper, 1981; Jacoby, 1994; Lawless et al., 1996; MacDonald, 1988; Nijhof, 1995; Voysey, 1975). In comparison, much less research has been directed towards questions around the levels, mechanisms and nature of illness-related stigmatisation itself. These studies have tended to be small-scale (sub-national) and designed around stigmatisations of single conditions such as autism (Gray, 2002), epilepsy (Jacoby et al., 2004; 2005), HIV/AIDS (Lawless et al., 1996; Parker and Aggleton, 2003) and Parkinson‘s disease (Nijhof, 1995), or else comparisons of general and specific group attitudes towards a small number of conditions such as combinations of cancer, AIDS, heart disease and diabetes (Hayes and Vaughan, 2002; Katz et al., 1987; Schulte, 2002; Walkey et al., 1999). While there are several national and sub-national studies (not including Australia) of public knowledge of and attitudes about epilepsy based on the first such study in the USA by Caveness and Gallup and using their same set of questions (Caveness and Gallup, 1980; Canger and Cornaggia, 1985; Hills and MacKenzie, 2002, Jensen and Dam, 1992; Mirnics et al., 2001), the data are limited by a restricted range of questions that concentrate on knowledge and behavioural intent indicators. Nevertheless, they provide some interesting associations between levels of knowledge about epilepsy and demographic variables. Results from an Austrian study (Spatt et al., 2005) are largely consistent with the others listed above. Spatt et al. found that being male, of low socioeconomic background, having little knowledge about epilepsy and no personal acquaintance with someone with epilepsy were independent predictors of unfavorable attitudes towards epilepsy.

Conclusion The need for systematic evidence-based social research into the social effects of epilepsy is well documented. A key strategy within the global campaign to bring epilepsy ‗out of the shadows‘ highlights the importance of gaining better understandings of the social effects of living with the world‘s most common serious brain disorder.

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Yet in the case of Australia we see an enigma in that while it is amongst the leading nations in medical research into epilepsy, Australia has lagged well behind much of the rest of the world when it comes to social effects research. Beren‘s work in the ‗80s and ‗90s pointed to the inherent problems of Australian data relating to epilepsy prevalence and associated costs (Banks et al., 1995: Beren et al., 1985). He concluded that even with statistical enhancements designed to account for likely nonreporting rates, the results still produced conservative baseline figures which warranted a circumspect approach. This remains the case today but researchers in the interim have perhaps heeded Beren‘s caution too well to the point of ignoring altogether data sources such as the National Health Survey (NHS). In fact the NHS is a potentially extremely valuable resource for Australian epilepsy researchers as it provides a rare opportunity to analyse the generalisable characteristics of respondents that self-reported epilepsy. NHS provides generally valid and reliable national data on a large range of issues such as family and employment status, education and income levels and demographic and other variables. In a practical sense, we can retain Beren‘s caution but still use the data to gain a snapshot of factors associated with living with epilepsy and their interrelations. National data that include a measure of epilepsy are rare. Yet they could provide highly persuasive means through which to make lobbying points that satisfy government‘s familiar demands for ‗hard‘ evidence. Investigating the effects of stigmatization on people with epilepsy has formed a large and respected part of epilepsy research. Authors such as Baker, Jacoby and Scambler in the UK have consistently shone light on the inequities that result. In the Australian context we need to document this in relation to its specific realties and contexts, for example, the multicultural effect that overlays epilepsy stigma with different meanings. In what ways is epilepsy stigma different in culturally and linguistically diverse communities in Australia?

References Banks, G.K., Regan, K.J. and Beran, R.G. (1995) ‗The Prevalence and Direct Costs of Epilepsy in Australia‘, in, R.G. Beran and C. Pachlatko (eds.) Cost of Epilepsy: Proceedings of the 2oth International Epilepsy Congress, Wehr/Baden: CIBA-GEIGY. Beren, R.G., Michelazzi, J., Hall, L., Tsimnadis, P. and Loh, S. (1985) ‗False negative response rate in epidemiological studies to define prevalence rates in epilepsy‘, Neuroepidemiology, 4, pp. 82-85. Busza J.R. (2001) ‗Promoting the positive: responses to stigma and discrimination in Southeast Asia‘, AIDS Care, 2001, vol 13 (4) pp. 441-456. Canger R, Cornaggia C. (1985) ‗Public attitudes towards epilepsy in Italy: results of a survey and comparison with West German data‘, Epilepsia, 26, pp. 221–6. Caveness, W.F. and Gallup, G.H. (1980) ‗A Survey of Public Attitudes Toward Epilepsy in 1979 with an Indication of Trends over the Part Thirty Years‘, Epilepsia, 21, pp. 509518. Fife, B.L., and Wright, E.R. (2000) ‗The Dimensionality of Stigma: A Comparison of its Impact on the Self of persons with HIV/AIDS and Cancer‘, Journal of Health and Social Behaviour, 41(1), pp. 50-67.

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Gray, D.E. (1993). Perceptions of stigma: the parents of autistic children. Sociology of Health and Illness, 15, 1, 102-20. Gray, D. (2002). `Everybody just freezes. ―Everybody is just embarrassed': felt and enacted stigma among parents of children with high functioning autism‘, Sociology of Health and Illness, 24, pp. 734-749. Hayes, R.A. and Vaughan, C. (2002) ‗Stigma directed toward chronic illness is resistant to change through education and exposure‘, Psychological Reports, 90, pp. 1161-1173. Hills, M. and MacKenzie, H.C. (2002) ‗New Zealand community attitudes toward people with epilepsy‘, Epilepsia, 43, pp.1583–9. Hopper, S. (1981). ‗Diabetes as a stigmatizing condition: the case of low income clinic patients in the United States‘, Social Science and Medicine, 15B, pp. 11-19. Jacoby, A. (1994). ‗Felt versus enacted stigma: a concept revisited‘, Social Science and Medicine, 38, pp. 269-74. Jacoby, A., Gorry, J., Gamble, C. and Baker, G.A. (2004) ‗Public Knowledge, Private Grief: A Study of Public Attitudes to Epilepsy in the United Kingdom and Implications for Stigma‘, Epilepsia, 45,11, pp. 1405-1415. Jacoby, A., Gorry, J. and Baker, G.A. (2005) ‗Employer‘s Attitudes to Employment of People with Epilepsy: Still the Same Old Story?‘, Epilepsia, 46, 12, pp. 1978-1987. Jensen R. and Dam, M. (1992) ‗Public attitudes towards epilepsy in Denmark‘, Epilepsia, 33, pp. 459–63. Katz, I., Hass, R.G., Parisi, N., Astone, J. and McEvaddy, D. (1987) ‗Lay People‘s and Health Care Personnels‘ Perceptions of Cancer, AIDS, Cardiac and Diabetic Patients‘,‘ Psychological Reports, 60, pp. 615-629. Keutsch, G.T., Wilentz, J. and Kleinman, A. (2006) ‗Stigma and global health: developing a research agenda‘, The Lancet, 367, pp. 525-527 Lawless, S., Kippax, S. and Crawford, J. (1996). Dirty, diseased and undeserving: the positioning of HIV positive women. Social Science and Medicine, 43, 9, pp.1371-77. MacDonald, L. (1988). ‗The experience of stigma: living with rectal cancer‘,. In Anderson, R. and Bury, M. (eds) Living with Chronic Illness, London: Unwin Hyman. Martin, L.S., Leff, M., Calonge, N., Garrett, C. and Nelson, D.E. (2000) 'Validation of selfreported chronic conditions and health services in a managed care population', American Journal of Preventative Medicine, 18, (3), 215-218. Mirnics, Z., Czikora, G., Zavecz, T. and Halasz, P. (2001) ‗Changes in public attitude towards persons with epilepsy in Hungary: results of a survey conducted in 1994 and 2000‘, Epilepsia, 42, pp. 86-93. Nijhof, G. (1995). ‗Parkinson's disease as a problem of shame in public appearances‘, Sociology of Health and Illness, 17, 2, pp. 193-205. Parker, R. and Aggleton, P. (2003) ‗HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action‘, Social Science and Medicine, 57, pp. 13-24. Reidpath., D.D., Chan, K., Gifford S.M. and Allotey, P. (2005) ‗‘He hath the French pox‘: stigma, social value and social exclusion‘, Sociology of Health and Illness, 27, 4, pp. 468489. RESt Group (2000) ‗Social Aspects of Epilepsy in the Adult in Seven European Countries‘, Epilepsia, 41, 8, pp. 998-1004. Scambler, G. (1989) Epilepsy, London: Tavistock.

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Scambler, G. and Hopkins, A (1986) ‗Being Epileptic: coming to terms with stigma‘, Sociology of Health and Illness, 8, pp. 26-43. Schulte, A. (2002) ‗Consensus versus Disagreement in Disease-Related Stigma: A Comparison of Reactions to AIDS and Cancer Patients‘, Sociological Perspectives, 45, 1, pp. 81-104. Spatt, J., Bauer, G., Baumgartner, C., Feucht, M., Graf, M., Mamoli, B. and Trinka, E. (2005) ‗Predictors for Negative Attitudes toward Subjects with Epilepsy: A Representative Survey in the General Public in Austria‘, Epilepsia, Volume 46, 5, pp. 736-742. Voysey, M. (1975). A Constant Burden.. London and Boston: Routledge and Kegan Paul. Walker C (1999) Meanings of chronic illness: usage of the term ‗chronic illness‘ by clinicans, policy makers and consumers in current literature. Chronic Illness Alliance Melbourne, Australia. Walkey, F.H., Taylor, A.J.W. and Green, D.E. (1999) ‗Attitudes to AIDS: A comparative analysis of a new and negative stereotype‘, Soc. Sci. Med., 30, 5, pp. 549-552. World Health Organisation (WHO) (2001) Epilepsy: social consequences and economic aspects. Fact sheet N°166, Geneva. Zielinski, J.J. (1988) ‗Epidemiology‘, in, J. Laidlaw, A. Richens and J. Oxley (eds.) A Textbook of Epilepsy, Edinburgh: Churchill Livingstone.

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter III

From Public to Personal: A Social and Ethnographic View of Epilepsy Lisa Francesca Andermann

Culture, Community and Health Studies, Department of Psychiatry, University of Toronto, Canada

Abstract Epilepsy is an illness that encompasses many social and cultural aspects, all affecting the daily lives of persons with epilepsy in many different ways. The literature on epilepsy within the social sciences, using qualitative techniques from medical anthropology, ethnography and narrative studies, has been documenting the lived experiences of people with epilepsy. This broadening of vision, moving away from a purely neurophysiological and scientific view, has played an important role in increasing our understanding of this illness over the past decades. This chapter will update the literature from an earlier review of social and ethnographic aspects of epilepsy (Andermann, 2000), as well as addressing new ways in which epilepsy has been portrayed in the public domain. Influences on public perceptions and stigma around this disorder will be examined through the use of some examples from current literature, arts and the growth of the Internet. While there has been much progress in certain areas of public education, stigma reduction and perception around epilepsy, there remains work to be done, particularly around areas of health disparities and immigrant and newcomer health.

 Correspondence: Dr Lisa Francesca Andermann, MPhil, MDCM, FRCPC, Assistant Professor, Culture, Community and Health Studies, Department of Psychiatry, University of Toronto, Psychiatrist, Mount Sinai Hospital. Tel. 416-586-4800 x 4514, Fax. 416-586-8654. E-mail: [email protected].

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Introduction The assessment and treatment of epilepsy in the 21st century has remained largely in the biomedical realm, although it is now more clearly recognized that this is an illness that encompasses many social and cultural aspects and affects the daily lives of persons with epilepsy in innumerable ways. There is a growing literature on epilepsy within the social sciences, mainly using qualitative techniques in medical anthropology, ethnography and narrative studies, which have been documenting the lived experiences of people with epilepsy and adding to the scientific understanding of this illness (Andermann, 2000). This chapter will review some of the new developments in these areas over the past decade. Studies around social aspects of epilepsy have generally fallen into five main categories: 1) Epidemiological surveys conducted by neurologists and medical practitioners of clinical epilepsy populations, looking at perceptions, knowledge, and attitudes towards epilepsy; 2) Community studies looking at knowledge, attitudes and practices towards epilepsy from a non-patient population (ie. university students, general public) with a focus on stigma and public education; 3) Ethnographic studies looking at the individual, family and social experiences of people with epilepsy; 4) Studies focusing on traditional healing and alternative medicine treatments for epilepsy in a variety of geographic settings; and 5) International health projects focusing on the ‗treatment gap‘ which take into account some of the sociocultural as well as economic and infrastructural problems with delivering epilepsy treatment in developing countries. One additional related area is the publication of collections of patient narratives describing their experiences with epilepsy (Schneider and Conrad, 1983; Schachter and Andermann, 2003, 2008). The chapter will conclude with a look at epilepsy in the arts, literature and the world of the Internet, and how this may impact the daily lives of people with epilepsy, as well as the perceptions of the general public.

New Directions Several new directions have been noted in the recent literature on social aspects of epilepsy since my last review of this area a decade ago (Andermann, 2000). There has been greater attention paid to the economic costs of having epilepsy, referring to direct treatment costs (medications, hospitalization, doctor visits) as well as the more indirect costs such as the burden of unemployment or sick leave. This has been extensively studied around the world, particularly in high-income countries, where epilepsy has been shown to have a significant impact on the national economy as well as at the individual level (Yoon et al, 2009). One such study of the costs of epilepsy in China also identified a heavy economic burden on patients with epilepsy in a developing country (Hong, 2009). Compared to more developed countries, some of the costs were lessened because of social factors including the use of family members in providing home care instead of hired personnel. However, the popularity of traditional Chinese medicine and treatment preferences such as annual travel to distant epilepsy centres for consultation, rather than seeing a nearby general practitioner, increased both cost of treatment and loss of productivity from work. This is an example of the many ways that local settings, cultural beliefs about illness and patient preferences are important variables and cannot be omitted from planning and delivery of treatment programs. Less

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tangible costs are also found in studies addressing the very broad area of quality of life, measuring how people‘s lives are impacted by epilepsy, as by many other chronic illnesses. However, a detailed exploration of this topic is beyond the scope of this chapter. With modern trends of globalization and immigration over the past few decades, there has been relatively little written about the experiences of immigrants and refugees with epilepsy in a new country as they learn to navigate new and often complex medical systems. Fadiman (1997) was one of the first to do so in her now classic book about a Hmong family with a child with severe epilepsy adapting to life in America. A revealing study of Pakistani immigrants with epilepsy in the UK (Rhodes, 2008) discusses the meaning of having a disability, given that epilepsy is often an invisible, sporadic and unpredictable condition, and how this affects stigma and social acceptance in this community. Taking on an identity as a disabled person was found less often among people with epilepsy from this ethnic minority than in the mainstream population, where it has gained some value as part of a larger political agenda involving rights of the disabled. As in many other places, treatment strategies are eclectic, with choices made from a complex mélange of medical knowledge, religious and folk beliefs, availability and affordability and patient and family understanding. A review of racial and ethnic disparities in the treatment of epilepsy found that state of the art therapies are being underutilized by minority populations (Szaflarski et al, 2006). Given that some of these groups, including African Americans, Native Americans, and some subgroups of Hispanics (elderly men), often have higher rates of epilepsy than the general population, this suggests that these health disparities are affecting significant numbers of people. They go on to further break down the disparities according to type of care received: a) disparities in clinical management; b) disparities in points of care (ie. emergency room vs. epilepsy clinic; c) disparities in state of the art treatments, including newest medications and epilepsy surgery; and d) disparities in health outcomes associated with epilepsy. Barriers to care, cultural factors influencing the medical encounter among various minorities are also reviewed. The authors conclude by making several recommendations for further studies. In addition to including more representation of ethnic differences in treatment studies, as well as a variety of study sites, the explanatory models of patients and treatment providers must be explored in order to better understand the reasons for these disparities, rather than simply documenting that they exist. Studies of social deprivation in a UK population showed that socioeconomic factors were found to increase the risk of convulsive status epilepticus in childhood, independent of ethnicity (Chin et al, 2009). The authors cite social causes including overcrowding, poor nutrition, infections, reduced access to health care, and delayed recognition and treatment of illness as possible causes for this finding. Socioeconomic disparities specifically related to epilepsy care have also been studied, showing differences in health care for people with epilepsy explained largely by where care is received in a study looking at a number of sites in the United States (Begley et al, 2009). An extensive survey of beliefs about epilepsy among Spanish-speaking adults in the US points to the need for more research in this area (Sirven et al, 2005). The researchers found a number of misconceptions about epilepsy, as well as high rates of stigma among the Hispanic population. This study is a reminder that in planning public education campaigns, the needs of ethnocultural minorities must be considered, and that factors such as education and literacy will impact the choice of methods used. Clinical approaches also need to be specifically

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tailored to certain populations. The authors make some valuable suggestions that can be adapted to other minority groups as well: ―More time needs to be devoted to education and counseling during clinic visits with Hispanics to debunk the myriad of myths associated with the condition and to lessen the burden of disease. One must be prepared to bridge the cultural and language barriers that typify this patient encounter to provide culturally competent care. Seizure education should be delivered in a factually direct manner using Spanish-language audiovisual media as opposed to books or pamphlets that rely on literacy. This is an important issue because cultural barriers can lead to underutilization of effective therapies. The only certainty we have is that Spanish-speaking patients with epilepsy or any other neurological condition will be increasingly commonplace regardless of one‘s practice in the United States, and we must be prepared to care for them‖ (2005, p. 264).

An exploratory study of Caucasian and Hispanic mothers of children with epilepsy showed that a simple intervention such as reading a brochure on neurobehavioral comorbidities of pediatric epilepsy in the clinic waiting room was enough to improve basic knowledge in both groups and to equalize some baseline differences in attitudes (Vona et al, 2009). Epilepsy and mental health problems can be viewed as a ‗double stigma‘. The need for further study on barriers to accessing mental health care, and more education for teachers, was also discussed. Stigma continues to affect the lives of people with epilepsy in many parts of the world. In a review of epilepsy in sub-Saharan Africa, Baskind and Birbeck (2005) describe the ‗social landscape of this disease‘, taking into account interactions with families, large and small communities, rural-urban differences, views of traditional healers and health professionals, cultural and religious belief systems, and socioeconomic impact of seizures. They conclude that epilepsy-associated stigma is ―a devastating burden to PWE [people with epilepsy] in SSA [sub-saharan Africa]‖, and that ―the social experience of epilepsy is inextricable from the geopolitical and social context of the sufferer‖ (p. 69). Reducing stigma requires further public education, which is tailored to local settings and focused on the most vulnerable in settings where health care resources are scarce. A much-cited paper by Kleinman et al (1995) on the social course of epilepsy in China laid the foundations for ethnographic research on the stigma of chronic illness, particularly of a culturally devalued condition such as epilepsy. They identify suffering as a social experience, rather than as an individual one, in keeping with Asian values of communalism over individualism, and found that moral blame could extend beyond the individual patient, affecting the entire family. A more recent comparative study using a methodology of ‗mini-ethnographies‘ in China and Vietnam found beliefs about epilepsy consisting of a ―complex interweaving of Western, traditional, and folk medicine concepts‖ and people being more comfortable holding these pluralistic views (Jacoby et al, 2008). Because of the in-depth anthropological approach used in their study, the authors are more optimistic about designing effective counter-stigma interventions in these countries based on specific local knowledge, explanatory models of illness, and a more complete understanding of the lived experience of epilepsy in these cultures. Looking specifically at knowledge gaps about epilepsy, Snape et al (2009) explore further the uncertainties and misconceptions held by people with epilepsy in China and their families from the study population mentioned above, and advocate for a more ‗community-

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oriented‘ approach to education. Greater communication and collaboration between Western and traditional health practitioners was also recommended, in addition to community support workers. Cross-cultural studies can also help to remind us of some of the universalities of living with epilepsy, despite great cultural and societal differences, as shown in a study between Kashmir and the United States (Khan et al, 2004). Anthropological fieldwork studies continue to document the medical models and magico-religious belief systems of indigenous peoples in Central and South America (Carod-Artul et al, 2007). Enquiry about shamanic treatments may lead to useful ethnobotanical studies of medical value, but are also ways of preserving oral history, unwritten cultural knowledge and ways of life that are disappearing. In a study from India on women with onset of epilepsy prior to marriage, Santosh et al (2007) discuss dilemmas around decisions to disclose or conceal the condition. In this culture of arranged marriages (close to 90%), more than half of the women (55%) concealed their history of epilepsy, fearing a breakdown in marriage negotiations. This secrecy was found to lead later on to unhappier marriages, and to significantly higher divorce (18%) and separation (20%) rates than in the general population. This would certainly not be a situation unique to India, and marriages arranged over longdistance can complicate these matters further. Personal experience from my own clinical practice with Sri Lankan Tamil patients in Toronto with severe and persistent mental illness, some also with seizures, revealed that men as well as women may conceal their illness in light of marriage negotiations, either through their own or their families‘ wishes. One man flew home to Sri Lanka to get married just over a month after recovering from temporal lobe epilepsy surgery, without letting his family or intended bride know any details about his medical problems. The date of the wedding had been selected long in advance through consultation with an astrologer, as is common in Tamil culture, and any request to change this auspicious wedding date would have led to lengthy delays in the marriage process until the next suitable date could be found. Fortunately, the trip and the marriage ceremony seem to have gone well, although the future, including negotiating immigration to Canada for the new bride, and their eventual life together as a couple, remains to be seen.

Lessons from Cultural Psychiatry It is well known from the mental health field that immigrants and refugees may be undertreated and underserviced even after moving to countries with abundant medical resources, because of lack of information and education, language barriers and other access difficulties, stigma and racism. This was well documented in the U.S. Surgeon General‘s report on mental health and a supplement on culture, race and ethnicity (US Department of Health and Human Services, 1999, 2001) showing that not only did minorities have less access to mental health care, the care that they actually did receive was not of equal quality to that of mainstream populations. The Institute of Medicine report Unequal Treatment: confronting racial and ethnic disparities in health care (Smedley et al, eds., 2003) also addresses this issue amidst a discussion of the larger area of health disparities. They cite Fadiman‘s Hmong case study involving a child with intractable seizures, but also remind us that the problem is larger than simply improving doctor-patient communication: ―…as we

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review the larger picture of disparities in healthcare, the issues are more resistant to analysis, and rest not only in relationships between physicians and patients but also in larger organizational practices, cultures, and the financing of healthcare systems‖ (p. 605). They go on to add that: ―Universalism in patient care becomes more difficult to achieve when pressures of time and money shape clinical interactions and treatment choices. Thus, attitudes of clinicians are but a limited part of the culture of medicine and the reasons for discrepancies in care. Institutional practices that favor the privately insured patient or the publicly insured patient, that favor patients with greater social and personal resourceseducation, money, and social position- and respond more readily to patient demands are likely to neglect or give less attention to patients who are poorer and who may be less socially and psychologically integrated‖ (2003, p. 606).

In a much-cited definition of culturally competent care, Terry Cross pulls these concepts together in the following concise statement: ―Cultural competence is a set of congruent behaviors, attitudes, and policies that come together in a system, agency, or among professionals and enable that system, agency, or those professionals to work effectively in cross-cultural situations (Cross, 1988). It is only by linking these three levels of the clinical, the agency or institution, and the larger health care or political system that cultural competence can be achieved. Studies such as ―Taking Culture Seriously: Ethnolinguistic Community Perspectives on Mental Health‖ (Simich et al., 2009a) provide an excellent model for health research in multicultural, immigrant-receiving countries. Using focus groups with five ethnolinguistic groups in Ontario, Canada, the study was designed to understand culturally diverse conceptions of mental health problems, their perceptions of mental health interventions, and community perceptions about necessary services. The study cites medical anthropologists Scheper-Hughes and Lock (1987): ―Conditioned by medical praxis, researchers have paid less attention to how collective cultural experiences and larger social systems shape interpretations of mental health and experiences of marginalization‖, and aim to broaden this discussion in a way that also seems very applicable to the field of epilepsy in diverse populations. In a related publication, Simich et al., (2009b) explore the concept of ‗social liminality‘ among immigrants, and the stresses of being ‗at the margins‘ or ‗at the threshold‘ of society, and how this social exclusion can affect mental wellbeing. If a physical illness such as epilepsy is added to the equation, as in some of the previous studies mentioned involving Hmong or Hispanic immigrants in the United States, or South Asians in the UK, one can see how even further marginalization could be perpetuated, not only from mainstream society but also from the medical system. However, Simich et al conclude on a positive note, noting that the concept of liminality implies the possibility of transformation, as in the anthropologist Victor Turner‘s concept of a rite of passage where one moves through different psychological states or roles in life. Immigrant adaptation, cultural negotiation and the struggle to maintain mental health in a new and unfamiliar setting can be thought of as ‗a non-linear process of reconciling the values and practices of two social worlds‘ (Portes and Rumbaut, 1996 in Simich, Maiter and Moorlag, 2009). This conceptualization is empowering as it places the reins for adaptation back into the hands of the participant, whether it is a new immigrant, person with a new diagnosis of epilepsy, or new situation in life. Negotiation is described as

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‗an active, empowering process of personal reflection and recovery from mental distress in a given social context‘ (Ochoka et al, 2005, in Simich, Maiter and Moorlag, 2009). Immigrant receiving countries, and their health care systems, need to be responsible for their role in providing accessible and appropriate services to newcomers. Guidelines for psychiatric assessment and diagnosis of culturally diverse individuals, which follow the DSM-IV Outline for Cultural Formulation, address issues involving cultural identity, migration history, cultural factors in the social environment and support systems, cultural explanations for illness, and impact of culture on the clinician-patient relationship (Lu, 1995; Andermann and Lo, 2005). Given the need for clinicians and caregivers to have a full psychosocial understanding of the person with epilepsy, particularly in the case of newcomers, but even for second generation immigrants who present a considerably greater population, these strategies for cross-cultural assessment have proven useful to psychiatrists and could be adapted for use in the area of neurology as well. It is also important not to overemphasize ethnic differences but also to attend to subcultures which may present with explanatory models of illness other than that of the mainstream biomedical model, and one could adapt these assessment tools to include minority groups such as adolescents, gender differences, inner city or urban poor, rural or remote populations, the homeless, and many others.

Modern Portrayals of Epilepsy: In Literature, Arts and Online There has been quite a bit written over the years about the artistic and historical aspects of epilepsy, from studies describing ancient treatments, recounting the lives of important figures who lived with this illness, and mentions of epilepsy in creative works. This section of the chapter will focus on more recent depictions of epilepsy, with particular emphasis on the past decade. ―I hadn‘t seen Richard have a tonic-clonic attack for a long time. They came at night, or when he was away at the centre. But I was used to his partial seizures, spells in which his awareness of everything inside him seemed temporarily suspended, his eyelids flickering while the rest of us went on eating or talking. I still didn‘t think of his difference from other people – his mental sluggishness and inflexibility, his irrational and aggressive moods – as a falling-off from some idea of a ‗normal‘ Richard. His otherness was second nature to me‖ (Fiennes, 2009, The Music Room, p. 135)

In his memoir The Music Room, writer William Fiennes weaves his recollections of his early family life and his brother‘s experiences with a severe form of epilepsy with his memories of growing up as a boy in a 700 year-old castle in England. There are rooms and artifacts to explore, a moat of his own, and a boy‘s view of growing up and learning about family, relationships and the world beyond the home. He appreciates his brother‘s sense of humour and love of nature, giving a balanced view of his struggles and difficulties as well as his strengths. His acceptance of his brother‘s illness is revealed best in the words quoted above, “his otherness was second nature to me” [italics mine] and this positive attitude is

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reflected throughout the book. Fiennes likely learned this equanimity from his parents, who dealt with his brother‘s seizures, as well as other difficult behaviours, with calmness and restraint, as shown in the quotation below: ―Now he was shaking, his whole body thrumming. His arms bent at the elbows and straightened in stiff jerks, again and again; his knees rose off the floor and slammed down as his legs bent and extended; his feet kicked and stamped in repeated spasms. Dad had grabbed the cushion from his armchair, and Richard‘s head thudded into it, his teeth chomping together with a sound like horseshoes on tarmac. ‗It‘s all right‘, Mum said, ‗we‘ll just wait for it to pass‘. I didn‘t move from the doorway. I watched my brother, the different parts of his body pounding the floor. The boards shook beneath him; vases and bowls vibrated on the tabletops; the French windows trembled in their frames.‖ (Fiennes, 2009, p. 9-10).

The author learns to model his parents‘ composure and acceptance of their son‘s illness. Perhaps due somewhat to the isolation of castle life, or time in later years spent at specialized epilepsy centres, there is remarkably no mention of teasing or stigma from others. Another notable element to mention about this slim and eloquent volume is the way in which the descriptions of the epilepsy have taken on a literary quality, rather than a clinical tone. Trembling windows, chomping teeth like the sound of horseshoes, and other experiences continue to impress readers with their poetry: ―The seizures often came at night….My mother and father went up and down the narrow stone stairs to his bedroom to check on the aftermath. He‘d fall into a deep sleep, as if each attack had been a test of physical and mental endurance. These full-blown night seizures left him shaken, his speech low and slurred, one word dissolving into another, and the next day he‘d move cautiously, as if he‘d just returned to the world after a long absence and couldn‘t trust the fundamental laws‖ (Fiennes, 2009, p. 18-19).

As described in the example above, there has been a growing interest in epilepsy in literature (Wolf, 2000), as well as in the arts, including popular music (Baxendale, 2008), and online as part of the explosion of the internet. An informal search of the popular YouTube website yielded over 9000 videos about ‗epilepsy‘ and over 27,000 for ‗seizure‘ (www.youtube.com). Clearly, public images of epilepsy are much more readily available than in the past. This can have both positive and negative implications, and the full ramifications of these developments have not yet been fully studied. Through the internet, hospitals, epilepsy associations, patient education groups and individual doctors can share accurate and updated medical information with people with epilepsy, families and the public. Isolated individuals can receive online support, reducing their sense of stigma. Persons with epilepsy are able to tell their own stories about their illness, and some choose to show video clips of their seizures. A recent study from India showed significant neuropsychological improvement in patients after viewing their own seizures. Dr. Atma Ram Bansal from the Sree Chitra Tirunal Institute for Medical Sciences and Technology in Trivandrum found that 3 out of 4 patients were more confident in facing others after viewing their own seizures, and 63 percent of patients in the study experienced an immediate positive impact and recommended seizure viewing to other patients (2009, www.epilepsyfoundation.org). While this may be helpful for patients‘ sense of self-

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expression and understanding, and for their care providers who are more informed about their seizures, the ways in which this may be interpreted by others is still unknown. In a news story from the UK, a national epilepsy society was critical that some YouTube videos - although not all - were voyeuristic, and the modern equivalent of the ‗Victorian freak show‘ (BBC News online, May 19, 2008). There were also privacy concerns raised as some of the videos appeared to have been made using cell phones on the street, and were likely posted without the consent of the person having the seizure. The comments made by people on the site about the videos were also an interesting source of public opinion, with most taking a sympathetic viewpoint, some sharing their own personal stories connected to epilepsy, but a minority suggesting that the person having the seizure was possessed and needed exorcism. This finding may not be surprising, given an American study of the presentation of epilepsy in English language print, which analyzed over 200 stories about epilepsy from 2000 newspapers and magazines, and found gross errors and misinformation about epilepsy in 1/3 of the articles (Krauss et al, 2000). This included scientific inaccuracy, exaggerated lethality of seizures or descriptions of miraculous treatment benefits. Celebrities and sports stars in the articles frequently denied having epilepsy, contributing to the ―Scarlet E‖ of stigma. Of greatest concern to the researchers are the stories referring to demonic imagery or divine intervention that perpetuate ancient misconceptions about this brain disorder. Morrell and Pedley (2000) caution that this study ―is only the tip of the iceberg of ignorance‖ and that ―as use of the internet becomes ubiquitous, the opportunity for dissemination of incomplete, biased or wrong information grows exponentially. They recommend steering people to accurate, comprehensive information websites, such as those run by national epilepsy associations, which should be sources of reliable, updated information. Most physicians and health care providers are already familiar with patients bringing in questions or concerns from information found on the internet, and having to deal with this issue in their day to day office practice. One striking example of making the illness visible to the public involves Portuguese-born dancer Rita Marcalo who made international news headlines when she created a piece of performance art entitled ‗Involuntary Dances‘, for which she received substantial arts funding in the UK (Brown, 2009). However, epilepsy advocacy groups protested the project, stating it was ‗voyeuristic‘ and that Ms. Marcalo‘s plan to stop her antiepileptic medications could be dangerous and set a precedent for others with the disease. In her words, ―My intention is to raise awareness of the condition by making it visible. People will have their own opinion but I am doing this from an artistic perspective‖. In the end, 40 people paid to attend the 24-hour performance event in Bradford, northern England, and no seizure took place despite attempts to provoke one with strobe lights, drinking wine and eating chocolate, as well as having purposely stopped her medications a month prior to the show (Verrent, 2009). As one arts reviewer wrote afterwards “I feel relief. A sense of protection – for myself, Rita and the rest of the audience. In the past, Rita has locked herself in toilets and chosen to have a seizure next to the toilet bowl rather than to tell people about her epilepsy. If she had had an attack during the performance, ironically it would have been one of the safest spaces she could have been in‖ (Verrent, 2009). Although epilepsy plays only a small part in the performance, actress Rachel Weisz playing the part of American heiress Penelope Stamp describes herself as an ―epileptic

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photographer‖ in the con-man caper The Brothers Bloom. The epilepsy diagnosis appears meant to add a sense of quirkiness to the eccentric character in this comedy. Weisz‘ character drives a yellow sports car, which she wrecks repeatedly, and ends up in hospital early in the film after knocking over a man on a bicycle and then having a seizure in her car, ruining the brothers‘ plans to gain her sympathy by deceiving her in a faked accident. Her epilepsy is referred to at least once more in the film, in a positive identification by one of the other characters. This being Hollywood, she does not lose her license, and is seen driving off at the end of the film to a new life with her con-man lover Bloom, played by Adrien Brody. More scholarly reviews of epilepsy in the movies have been compiled by Baxendale (2003) and Kerson et al (2000, 2006). Unlike Brothers Bloom, most films are found to portray roles with epilepsy as ―one dimension of unsympathetic, out-of-control, and feared characters‖ (Kerson et al, 2000). Baxendale finds that epilepsy in women is often used to depict ‗exotic vulnerability‘ in keeping with the example above, while male characters are viewed as ‗mad, bad or dangerous‘. Their analysis shows that ―epileptiform events drive the narrative, support the genre, evoke specific emotional reactions, accentuate traits of characters with seizures, highlight qualities of other characters through their responses to the seizures, act as catalysts for actions, and enhance the voyeuristic experience of the audience‖ (Kerson et al, 2006). Films and television shows are critiqued for showing out of date portrayals of epilepsy and its treatments, not in keeping with modern scientific knowledge. Baxendale concludes by stating that ―Although it is not for the medical profession to dictate or censor cinematic content, a keen eye on these depictions will help us to understand and perhaps combat some of the stereotypes and myths that continue to surround epilepsy in the 21st century‖. Keeping an eye on epilepsy in the arts, film, literature and on the Internet, as well as the reactions of both the public and people with epilepsy to these depictions, will be an important next step.

Conclusion People with epilepsy, and their families and friends, continue to grapple with these issues in their daily lives. Linking the discussion above back to the literature, studies such as ―Daily life in epilepsy‖ (Raty et al, 2007) and ―Public knowledge, Private Grief‖ (Jacoby et al, 2004) describe ongoing issues of stigma, exclusion, restriction and marginalization. There is also the very broad area of psychological adaptations to epilepsy as a chronic illness, and the related impact on mood and emotions, self-esteem and self-perception which will be addressed as well by others in more detail elsewhere in this volume. People with epilepsy demonstrate resilience, perseverance, and creativity; finding new ways to express themselves and creating meaning in their lives. These accomplishments also need to be equally documented. Further discussion on the collaboration of biomedical and social sciences, as well as the arts, should lead to improved adaptations and reduce the burden of epilepsy around the world.

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References Andermann L. (2000). Epilepsy in our world: An ethnographic view. Epilepsy and Behavior, 1:169-175. Andermann L, and Lo H-T. (2005). Cultural competence in psychiatric assessment. In: Psychiatric Clinical Skills. D. Goldbloom, ed. Elsevier, pp. 21-28. Baskind R, Birbeck GL. (2005). Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease. Epilepsy and Behavior. Aug;7(1):68-73. Baxendale S. (2003). Epilepsy at the movies: possession to presidential assassination. Lancet Neurol. Dec;2(12):764-70. Baxendale S. (2008). The representation of epilepsy in popular music. Epilepsy and Behavior, 1: 165-169. BBC News Online. (2008). YouTube epilepsy videos condemned. BBC News online, May 19th. Available from: http://news.bbc.co.uk/2/hi/health/7408046.stm Begley C, Basu R, Reynolds T, Lairson D, Dubinsky S, Newmark M, Barnwell F, Hauser A, Hesdorffer D, Hernandez N, Karceski S, and Shih T. (2009). Socioeconomic disparities in epilepsy care: Results from the Houston/New York City health care use and outcomes study. Epilepsia, 50(5):1040-1050. Brown J. Artist to have epileptic fit live on stage. The Independent, November 20, 2009. Available from: http://www.independent.co.uk/arts-entertainment/art/news/artist-to-havean-epileptic-fit-live-on-stage-1824122.html Carod-Artal FJ and Vazquez-Cabrera CB. (2007). An Anthropological study about epilepsy in native tribes from Central and South America. Epilepsia, 48(5):886-893. Chin R, Neville B, Peckham C, Wade A, Bedford H, and Scott R. (2009). Socioeconomic deprivation independent of ethnicity increases status epilepticus risk. Epilepsia, 50(5):1022-1029. Cross TL. (1988). Service to minority populations: cultural competence continuum. Focal Point, 3:1–4. Epilepsy Foundation (2009). Viewing seizures can be helpful for epilepsy patients. Available from: http://www.epilepsyfoundation.org/epilepsyusa/news/Viewing-Seizures-Can-BeHelpful-for-Epilepsy-Patients.cfm Fadiman A. (1997). The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. New York: Farrar, Straus and Giroux, 360 pp. Fiennes W. (2009). The Music Room. Toronto: Random House Canada, 216 pp. Hong Z, Qu B, Wu X-T, Yang T-H, Zhang Q and Zhou D. 2009. Economic burden of epilepsy in a developing country: A retrospective cost analysis in China. Epilepsia, 50(10):2192-2198. Jacoby A, Wang W, Dang Vu T, Wu J, Snape D, Aydemir N, Parr J, Reis R, Begley C, de Boer H, Prilipko L and Baker G. (2008). Epilepsy and Behavior, 12:286-297. Jacoby A, Gorry J, Gamble C and Baker GA. (2004). Public knowledge, private grief: A study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia, 45(11):1405-1415. Kerson TS, Kerson JF, Kerson LA. (2000). She can have a seizure maybe; then we can watch: the portrayal of epilepsy in film. Soc. Work Health Care, 30(3):95-115.

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Kerson TS, Kerson LA. (2006). Implacable images: why epileptiform events continue to be featured in film and television. Epileptic Disord, 8(2):103-13. Khan A, Huerter V, Sheikh SM, Thiele EA. (2004). Treatments and perceptions of epilepsy in Kashmir and the United States: a cross-cultural analysis. Epilepsy and Behavior, 5:580586. Kleinman A., Wang W-Z, Li S-C, Cheng X-M, Dai X-Y, Li K-T and Kleinman J. (1995). The social course of epilepsy: Chronic illness as social experience in interior China. Soc. Sci. Med, 40(10):1319-1330. Krauss GL, Gondek S, Krumholz A, Paul S, and Shen F. (2000). ―The Scarlet E‖: The presentation of epilepsy in the English language print media. Neurology, 54(10):18941898. Lu FG, Lim RF, Mezzich JE. (1995). Issues in the assessment and treatment of culturally diverse individuals. In Oldham J and Riba M, editors: American Psychiatric Press Annual Review of Psychiatry, Washington DC, 1995, APA Press, pp. 477-510. Medley M. (2009). The Brothers Bloom: The perfect mime. Available from: http://www.nationalpost.com/arts/movies/story.html?id=1617531 Morrell M and Pedley T. (2000). ―The Scarlet E‖: Epilepsy in still a burden. Neurology, 54(10):1882. Raty LKA, Soderfeldt BA and Wilde Larsson BM. (2007). Daily life in epilepsy: Patients‘ experiences described by emotions. Epilepsy and Behavior, 10:389-396. Rhodes, P.J., Small, N.A., Ismail, H., and Wright, J.P. (2008). 'What really annoys me is people take it like it's a disability', epilepsy, disability, and identity among people of Pakistani origin living in the UK. Ethnicity and Health, 13(1), 1-21. Santosh D, Santosh Kumar T, Sankara Sarma P, and Radhakrishnan K. (2007). Women with onset of epilepsy prior to marriage: Disclose or conceal. Epilepsia, 48(5):1007-1010. Schachter S and Andermann L (eds). (2003). The Brainstorms Village: Epilepsy in our world. Lippincott, Williams and Wilkins, 217 pp. Schachter S and Andermann L (eds). (2008). Epilepsy in our world: Stories of living with seizures from around the world. Oxford University Press, 211 pp. Scheper-Hughes N and Lock M. (1987). The mindful body: A prolegomenon to future work in medical anthropology. Medical Anthropology Quarterly 1:6-41. Schneider J and Conrad P. 1983. Having epilepsy: The experience and control of illness. Temple University Press, 240 pp. Simich L., Maiter S., Moorlag E., and Ochocka J. (2009a).Taking Culture Seriously: Ethnolinguistic Community Perspectives on Mental Health. Psychiatric Rehabilitation Journal, 32(3), 208. Simich L, Maiter S and Ochocka J. (2009b). From social liminality to cultural negotiation: Transformative processes in immigrant wellbeing. Anthropology and Medicine, 16(3):253-266. Sirven JI, Lopez RA, Vazquez B and Van Heverbeke P. (2005). Que es la Epilepsia?: Attitudes and knowledge of epilepsy by Spanish-speaking adults in the United States. Epilepsy and Behavior, 7:259-265. Smedley BD, Stith AY and Nelson AR. (2003). Unequal Treatment: confronting racial and ethnic disparities in health care. The National Academies Press, Washington, 764 pp.

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Snape D, Wang W, Wu J, Jacoby A and Baker GA. (2009). Knowledge gaps and uncertainties about epilepsy: Findings from an ethnographic study in China. Epilepsy and Behavior, 14:172-178. Szaflarski M, Szaflarski JP, Privitera MD, Ficker DM, Horner RD. (2006). Racial/ethnic disparities in the treatment of epilepsy: what do we know? What do we need to know? Epilepsy and Behavior, 9(2):243-64. US Department of Health and Human Services. (1999). Mental Health: A Report of the Surgeon General. Rockville, Md, DHHS, Substance Abuse and Mental Health Services Administration, Centre for Mental Health Services, National Institutes of Health, National Institute of Mental Health. US Department of Health and Human Services. (2001). Mental Health: Culture, Race, and Ethnicity. Supplement to Mental Health: Report of the Surgeon General. Rockville, Md, DHHS, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health. Verrent J. (2009). Review: Jo Verrent sees Rita Marcalo‘s Involuntary Dances. Available from: http://www.disabilityartsonline.org/?location_id=1110, Dec. 12. Vona P, Siddarth P, Sankar R and Caplan R. (2009). Obstacles to mental health in pediatric epilepsy: Insight from parents. Epilepsy and Behavior, 14:360-366. Wolf P. (2000). Epilepsy in contemporary fiction: fates of patients. Can. J. Neurol. Sci., 27(2):166-72. Yoon D, Frick K, Carr D and Austin J. (2009). Economic impact of epilepsy in the United States. Epilepsia, 50(10):2186-2191.

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter IV

Quality of Life in Epilepsy Deirdre P. McLaughlin

School of Population Health, The University of Queensland, Herston Road, Herston Quensland, Australia

Abstract Epilepsy is a unique chronic condition because of the sometimes public and always unpredictable nature of the seizures that typify this disorder. While all chronic conditions impact on the quality of life of the people who experience them, the uncertainty and stigma associated with seizures and epilepsy may engender psychosocial handicaps that are unique among chronic conditions. An extensive body of literature has indicated that people with epilepsy encounter difficulties with work and social activities and experience poorer functioning across a range of domains because of their condition. This chapter will discuss the concept of quality of life (QOL) and the psychosocial issues that impact on the QOL of people with epilepsy. Importantly, the chapter takes an adult lifespan perspective, looking at the functioning of adults and older adults with epilepsy and discussing the differences in the manifestations and impact of epilepsy on QOL across the adult lifespan. Factors which commonly impact on QOL in epilepsy, such as depression, psychosocial adjustment, stigma and seizure frequency are discussed.

Introduction Quality of life (QOL) is often a poorly defined term, however, most authors agree that any definition of quality of life (QOL) must be measurable, evaluative over time and subjective, as well as addressing key domains (Selai and Trimble, 1995). The World Health Organization has defined QOL as ―the individuals‘ perception of their position in life in the context of the culture and the value system in which they live and in relation to their goals,  Correspondence: Dr Deirdre P McLaughlin, School of Population Health, The University of Queensland, Herston Road, Herston Qld 4006. Telephone +61 7 3365 5335, Facsimile +61 7 3365 5540. E-mail: [email protected].

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expectations, standards and concerns‖ (Kuyken, 1995). Nonetheless, disagreement still exists regarding the conceptualisation and assessment of QOL, in particular what constitutes good quality of life versus what influences it (Rogerson, 1995). A number of researchers have emphasised that the core of QOL is the person‘s value judgement about life in general or specific life domains (Leventhal and Colman, 1997; Suurmeijer et al., 2001). This differs from an assessment of physical, social or psychological functioning or status, which may be regarded as determinants of QOL, not of QOL itself. QOL is presented in this context as a value judgement reflecting a unique perspective which represents an individual‘s assessment of personal functioning. As Devinsky and Cramer (1993) state: ―The patient is the only one who knows how he or she feels, how the disorder effects that persons vigour, self confidence, ability to socialise, obtain work and function at home and on the job. Surely the patient‘s reports may be biased, as may the doctor‘s. However, the patient is the person who must define his own quality of life… Only the patient knows if an imbalance exists between expectations and reality....‖ (p2). Studies which examine QOL in people with health related conditions generally refer to this as health related quality of life (HRQOL): that is, the value ascribed to a person‘s life by the individual, as a result of his or her own health and influences such as personal behaviour, medical care, health policy or other social forces (Mozes et al., 1999). Bowling (1995) has expanded the definition of HRQOL to include social functioning, including perceptions of health, life satisfaction and well being, as well as satisfaction with treatment, outcome and health status. Dodrill and Batzel (1993) acknowledged the importance of psychosocial aspects of QOL for people with epilepsy when they developed the Washington Psychosocial Seizure Inventory, which captures aspects of QOL including adjustment to seizures, medical management and medication issues. Much research into the QOL of people with epilepsy refers to HRQOL, however, this chapter will use the broader term, QOL, throughout. Indicators of QOL in epilepsy include an individual‘s response to their life circumstances, the gap between their expectations and circumstances and their ability to meet their personal needs (Baker, 2001). QOL has been variously depicted as consisting of three to five dimensions – physical health, mental health and social health (Privitera and Ficker, 2004) as well as vocational and economic well-being (Spencer and Hunt, 1996) and is often impaired in people suffering a chronic illness. Physical health encompasses aspects of general health, pain and activities related to daily functioning. Psychological health incorporates emotional well-being, self-esteem, cognition and psychiatric health. Social health includes aspects of interpersonal relationships, occupation and living arrangements. Vocational and economic well-being are intrinsically related and comprise aspects of education, employment and financial resources that enhance the ability to live a comfortable, fulfilled life. General health perception and physical functioning have been shown to be important variables associated with QOL, particularly within elderly populations where there is empirical data demonstrating that functional impairment has a major impact on global self-ratings of health status (Mozes et al. 1999). In an intriguing application of the trajectory model of chronic illness, Jacoby and Baker (2008) expounded on both the course of QOL and the time scale of QOL events that result from the development of seizures and epilepsy. The trajectory model describes the course of chronic conditions (Corbin and Strauss, 1991) in a phased model, beginning prior to diagnosis (pretrajectory phase), and continuing to diagnosis (trajectory onset), life threatening event (crisis), active illness (acute), controlled illness (stable), uncontrolled symptoms (unstable),

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deterioration (downward) and finally, death. In the context of QOL of people with epilepsy, Jacoby and Baker (2008) discussed the possible trajectories for people with epilepsy in terms of single or multiple seizures, surgical interventions, remission, psychiatric or other comorbidities, stigma, cerebral reserve, self-efficacy and social support and optimism. QOL has been compared across epilepsy and other chronic conditions as well as between people with epilepsy and normal controls (Nubukpo et al., 2004; Szaflarski and Szaflarski, 2004). Most authors agree that the impact of epilepsy is substantial and adults with epilepsy have reported QOL which is significantly poorer than normal controls (Nubukpo et al. 2004) and comparable with other chronic conditions (Kobau et al., 2007; Lau et al., 2001). Epilepsy is a distinctive chronic condition because of the sometimes public and always unpredictable nature of the seizures that typify this disorder. All chronic conditions impact on the quality of life of the people who experience them. For people with epilepsy, the uncertainty and unpredictability of seizures may engender psychosocial handicaps that are unique among chronic conditions. Compounding this, the stigma which is associated with epilepsy and the possibility that a remission of seizures may not be possible or may be dependent on idiosyncratic reactions to anti-epileptic drug (AED) treatment, lead to an unpredictable outcome and an attendant reduction in quality of life of sufferers (Baker, 2001). Studies based on community samples have indicated that people with epilepsy encounter difficulties with work and social activities, and experience poorer functioning across a range of domains because of their condition (O‘Donoghue et al., 1999). While an extensive body of literature has been devoted to the analysis of psychosocial and quality of life issues in adults with epilepsy (Birbeck et al., 2002; Suurmeijer et al. 2001), few studies have addressed the same issues in an older population (Martin et al., 2003; Pugh et al., 2005), thus there is uncertainty about whether the factors that impact on the QOL of younger adults also affect older adults. Of the limited number of studies which have examined QOL in older adults with epilepsy, findings have been mixed, with one large study reporting that older adults coped better with their epilepsy than the young or mid aged (Pugh et al. 2005), while a recent Australian study found that older adults with epilepsy reported significantly poorer QOL than a matched control group without epilepsy (McLaughlin et al., 2008a). According to Tallis (1993), the occurrence of seizures represents ― a significant watershed in an older person‘s life after which there is a sharp decline in functional independence‖ (p80). Across the lifespan, people with epilepsy frequently have limitations placed on their driving and this, together with the apprehension that further seizures may occur, could limit the ability of older adults to access their social networks and limit social interactions. Older people with epilepsy may be especially vulnerable to social isolation: anxiety surrounding attendance at social events may be explained by the possibility of sustaining a serious injury if a fall occurs during a seizure. Social isolation is frequently associated with epilepsy (Tallis 1997) as people are inhibited from many social contacts and outings through fear of having a seizure. This can lead to what Tallis (1997) so succinctly describes as ―the three f‘s..... fear of further fits‖ (p.312). Earlier studies of younger adults indicate that loss of independence can seriously impact on QOL (Coffey and Cummings, 1994; Mozes et al. 1999). Employment issues differ according to age also: the presence of epilepsy across the lifespan limits work opportunities (O‘Donoghue et al, 1999). Employment has been identified as an important factor in contributing to QOL in epilepsy (De Boer, 2005). Obtaining employment in later adulthood can be challenging and the additional burden imposed by

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epilepsy, particularly where seizures are uncontrolled, may lead to reduced opportunities and limited employment options. Ageing affects multiple domains and quality of life may be reduced in late adulthood as individuals come to terms with the physical, cognitive, affective and social changes wrought by increasing age. Many of these age related changes can affect QOL, such as functional limitations, increased comorbidities, particularly in medical conditions, and changing life circumstances. The issues which most affect QOL in younger adults may differ from those which affect older adults, who may have multiple comorbidities and age-related physical limitations. In particular, a reduction in functional independence can significantly impinge on the QOL of older people, with limitations in physical functioning a major factor in the reduction of self-assessed quality of life in populations with chronic and acute conditions (Mozes et al. 1999). Despite a growing appreciation of the importance of research into conditions which affect older people, only sporadic empirical investigations have been conducted on any aspect of epilepsy in this age group and most of these have focused on the pharmaceutical and medical implications of antiepileptic drug (AED) treatment (Brodie et al., 1999; Kramer, 2001) with few reporting on the psychosocial impact of, and adaptation to, epilepsy in the life of older adults (Baker et al., 2001; Martin et al. 2003). Typically, the results of studies using younger patients have been extrapolated to identify social dysfunction and social limitations imposed by epilepsy on older adults. However a limited number of studies have shown that the manifestations and impact of seizures in older people can be quite different from those in younger populations (Baker et al. 2001; Pugh et al. 2005) and a number of authors have suggested that epilepsy in older people may have both immediate and less immediate consequences that may impact deleteriously on quality of life (Devinsky, 2005). In summary, QOL is a broad, complex and idiosyncratic construct that may be adversely affected by the presence of epilepsy. The determinants of QOL in epilepsy may differ between younger and older adults and may also vary in their impact on QOL across the lifespan. In the following sections, this chapter will explore a number of factors which are generally agreed to affect QOL in epilepsy: depression, psychosocial adaptation, stigma and seizure frequency.

Depression Psychiatric co-morbidity, in particular depression, has been strongly associated with epilepsy and with a concomitantly adverse impact on QOL (Johnson et al., 2004). The relationship between depression and epilepsy has been recognized since the time of Hippocrates, who observed a relatively high frequency of ―melancholia‖ among those with epilepsy, as well as asserting that ―melancholics were prone to develop epilepsy‖ (Lewis, 1934). In a comprehensive review of the published data relating to depressive disorders in people with epilepsy, Kanner (2003) suggested lifetime prevalence of major depressive disorder ranging from 8% to 48%. It has been suggested that depression associated with epilepsy may involve an organic mood disorder either alone or in combination with a psychosocial reaction to the unique characteristics of epilepsy. Depression in epilepsy is not simply a reactive process to a chronic disorder, but rather is the result of multiple factors

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acting simultaneously and includes biological, psychological and social processes. Hermann and Whitman (1992) proposed that risk factors for psychopathology associated with epilepsy included seizure related variables such as age of onset, seizure type, aetiology and frequency, stigma and psychosocial factors such as adjustment to epilepsy, fear of seizures, financial stress, social support and locus of control. Depression in epilepsy has been classified into three types of disorder depending on its temporal relation to the seizure (ictus): ictal, periictal and interictal. Ictal disorders refer to those identified as associated with the seizure itself; that is, the seizure comprises affective symptoms such as fear, anxiety and depression of varying severity (Barry et al., 1993). Periictal disorders are described as clusters of affective symptoms that either precede or follow the seizure (Kanner, 2003). Mood changes associate with ictal and periictal periods have been well documented (Barry et al. 1993) with mood symptoms temporally associated with seizure activity ranging from severe depression with suicidal ideation to mania. Interictal depression is completely unrelated to the occurrence or manifestation of seizures and is the most frequent presentation of affective disorder among patients with epilepsy (Kanner, 2003; Kanner and Palac, 2000). Controversy surrounds the diagnosis of interictal depression. A number of researchers have asserted that the symptoms of interictal depression in people with epilepsy vary from that of major depressive disorder and have found it more useful to refer to this type of depression as dysthymic-like disorder of epilepsy (DLDE) (Blumer, Montouris, and Davies, 2004; Kanner, 2003; Kanner and Nieto, 1999). Supporting evidence from a number of studies has suggested that the most common presentation of interictal depression includes dysthymic features of intermittent course characterized by symptoms of irritability, paranoia, humourlessness and psychotic behaviour (Blumer, 1991; Kanner and Barry, 2001; Mendez and Doss, 1986). A number of researchers disagree with the differential diagnosis of DLDE, however, arguing that the symptoms of this disorder are in fact congruent with major depressive disorder as observed in people without epilepsy (Kanner and Barry, 2001). Depressive disorders in people with epilepsy are often unacknowledged and treatment may not be provided as a result. Previous studies have reported high rates of untreated and unrecognised depression among people with epilepsy (O‘Donoghue et al. 1999), with many participants reporting high scores on psychometric measures without any previous diagnosis of depression. A number of reasons for this have been suggested including: (i) patients minimising psychiatric symptoms for fear of being further stigmatised, (ii) clinicians failing to enquire about psychiatric symptomatology, (iii) both patients and clinicians regarding depression as a normal reaction and adaptation to epilepsy, and (iv) concerns about interactions between anti-depressant and anti-epileptic medications (Kanner and Palac, 2000; Kuhn et al., 2003). The failure to recognize and treat depression in epilepsy may lead to catastrophic consequences: the suicide rate for depressed people with epilepsy is estimated to be five to ten times higher than in the general population (Kanner and Palac, 2000; Robertson, 1997). For people with partial seizures, the rate has been assessed at up to 25 times higher than expected (Kanner and Palac, 2000; Mendez and Doss, 1992). Gilliam and Kanner (2002) concluded that suicide is a significant cause of mortality in people with epilepsy, with completed suicides estimated at 5% compared with 1.4% in the general population (DeCosta, 1998). Risk factors associated with successful suicides include interictal depression (Kanner and Nieto, 1999), complex partial seizures, often associated with temporal lobe epilepsy, prior

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psychiatric hospitalisation (Batzel and Dodrill, 1986) and treatment in a tertiary epilepsy centre (Hermann and Whitman, 1992). Mood disorders have a significant impact on the QOL of people with epilepsy and both anxiety and depression have been implicated in reduced QOL (Johnson et al., 2004). In particular, the adverse effect of depression on QOL in epilepsy has been strongly supported in a number of studies among adult populations (Boylan et al., 2004; Loring et al., 2004; Pulsipher et al., 2006; Senol et al., 2007). Suuremeijer et al. (2001) examined a number of clinical variables such as seizure frequency, age of onset, number of AEDs, as well as aspects of social functioning and psychological distress on quality of life. None of the clinical variables correlated with QOL, with mental health and psychological distress accounting for the largest amount of variance in QOL. Reduced QOL among people with epilepsy and depression compared with people with epilepsy without depression is commonly reported (Loring et al. 2004; Zeber et al., 2007). The strong, independent effect of depression on QOL in epilepsy has led some authors to suggest that ―any therapeutic intervention observed to improve ‗quality of life‘… must at least consider the possibility that the outcome is strongly related to alteration in mood, not betterment of the underlying neurological or medical condition‖ (Tracy et al., 2007). Little research has examined the impact of depression on the QOL of older people with epilepsy. In general, older adults report lower rates of depression than younger adults, with the exception of adults who are in care facilities. A recent Australian study of community dwelling adults over the age of 60 found that depression, in particular the more chronic symptoms of dysthymia, were significantly associated with reduced QOL (McLaughlin et al., 2008b). In contrast, most studies of younger adults suggest that it is severe depression, or major depressive disorder, that is the most disruptive of QOL.

Psychosocial Adjustment Psychosocial adjustment in epilepsy has been referred to as the ability of the individual to deal effectively with society and the environment (Dodrill and Batzel, 1993). In particular, the emphasis is on how well the person functions in such spheres as education, employment finances, emotional adjustment and interpersonal relationships. For persons with epilepsy, psychosocial functioning also incorporates adjustment to seizures and medication and medical management issues (Dodrill and Batzel, 1993). De Costa (1998) has defined psychosocial as the method by which a person perceives his or her epilepsy and how this perception of the disorder affects the nature and quality of social and interpersonal relationships, as well as the affect on QOL. Psychosocial adjustment therefore is an important aspect of QOL and improvements in psychosocial variables have been linked to improved quality of life in a number of studies involving adults with epilepsy (Hermann, 1992; Suurmeijer et al, 2001). Generally, research has indicated that the greatest difficulties experienced in psychosocial adjustment relate to social isolation, psychological distress, and adjustment to seizures, including perceived stigma and discrimination (Suurmeijer et al, 2001). Generally, these studies have identified a clear relationship between psychosocial status and anxiety, depression, frequency of seizures and perceived stigma, with reduced psychosocial functioning apparent where the other named factors were elevated (Jacoby et al., 1996;

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Schackleton et al., 2003). These difficulties are unaffected by country or culture: consistently, people with epilepsy identify psychosocial maladjustment, particularly experiencing difficulties with emotional and interpersonal adjustment. Although epilepsy in late adulthood may not negatively impact on all of the same areas of function as that experienced by younger adults, nonetheless its impact on interpersonal interactions is no less important (Tallis, 1997). In a review of patients he had tested over 23 years of neuropsychological practice, Dodrill (1997) identified eighteen who were over 60 and who had completed measures of psychosocial functioning. Dodrill reported that these patients demonstrated mild depression and problems associated with emotional adjustment which were consistent with other studies using younger participants (Lau et al. 2001; Mirnics et al., 2001).The presence of epilepsy in later life has important psychosocial implications. Low self-esteem, increased dependency and consequent feelings of helplessness, fear of loss of control, stigmatisation and loss of independence including transportation problems, all contribute to a reduced QOL (Coffey and Cummings, 1994). Recent studies of older adults report that older adults with epilepsy had a lower QOL and reduced psychosocial functioning compared with healthy, age-matched controls (McLaughlin et al., 2008a). This is consistent with research in younger populations which depicts epilepsy as a chronic condition that reduces quality of life (Cramer et al., 1998; Langfitt, 1995; Lau et al. 2001).

Stigma Differentiating epilepsy from other chronic conditions experienced in late adulthood are the seizures that are the external manifestation of this disorder. Epilepsy is a chronic condition that is defined by unpredictable physical events that can exert a deleterious impact on the QOL of sufferers. In particular, seizures have been shown to adversely affect QOL through the stigma that is associated with them, and this may be exacerbated if the epilepsy is uncontrolled and seizures are frequent (Baker et al., 2000) Epilepsy has often been regarded as one of the most stigmatising medical impairments (Fisher, 2000). Trostle (1997) has written ―to have epilepsy is to open oneself to the full force of past and contemporary social prejudice and misunderstanding.‖ (p2185). The negative stereotypes surrounding the diagnosis of epilepsy have been well documented as have legal and statutory discriminations imposed on those affected by epilepsy (Conrad and Schneider, 1992). Anti-marriage laws for people with epilepsy were enacted in the United States as recently as 1939 and remained in force until the 1980s. In the United Kingdom, marriage to people with epilepsy was prohibited until 1970. The first eugenic sterilization law was passed in the United States in 1907 and included people with epilepsy in its jurisdiction. Between 1907 and 1064, there were some 60,000 sterilizations of people with epilepsy in the United States and the institutionalisation of people with epilepsy was legally permitted in 17 states until the mid 1970s, while epilepsy remained a barrier to immigration to the United States and Australia until quite recently (Dell, 1986). The effect of this stigma upon people with epilepsy, particularly older people whose attitudes to epilepsy were formed during the early 1950s and 1960s, is yet to be quantified. Older people may have a schema that depicts epilepsy as a highly stigmatising condition, identifying it with many historical prejudices and misunderstandings. However, studies of

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younger people suggest that stigma is positively correlated with measures of perceived helplessness, depression, anxiety and somatic symptoms and negatively associated with selfesteem and life satisfaction (Arnston et al., 1986). It has been suggested that there are two differing types of stigma: felt and enacted stigma. Enacted stigma refers to actual episodes of discrimination or negative social consequences of epilepsy, while felt stigma refers to the feelings of shame and embarrassment associated with epilepsy and the person‘s fear that they will be the victim of enacted stigma. A diagnosis of epilepsy itself confers a label of ‗epileptic‘ on the patient, which Jacoby (1994) argues diminishes personal identity so that it is ‗spoiled‘. This understanding is based on what people with epilepsy believe to be a commonly held view of epilepsy as a stigmatising condition. The evidence is equivocal about the view held by the general population towards people with epilepsy however, with little empirical support for the notion that people with epilepsy are discriminated against or suffer the result of negative attitudes towards epilepsy (Scambler and Hopkins, 1986). Nonetheless, people‘s perceptions and feelings of stigma have been strongly related to psychopathology and limitations on quality of life (Arnston et al. 1986). There appear to be age related differences in perceptions of stigma: studies of both younger and older adults have reported that older people are less likely to report feeling stigmatised by their epilepsy than younger people (Baker et al. 2001; Jacoby, 1994). These results have been attributed to the decreasing salience of employment and the reduced significance of workplace discrimination as people approach retirement. Overwhelmingly, the evidence suggests that the majority of adults with epilepsy describe feeling stigmatised (Baker et al. 2000; Lee, Yoo and Lee, 2005), particularly where seizures are uncontrolled (Jacoby et al., 2001). Perceived stigma has been associated with worry, negative feelings about life and long term health problems. 79% of respondents in a large study who described their quality of life as ‗terrible‘ also felt stigmatised (Baker et al 2000). The importance of perceived, or felt, stigma as a contributory factor to poor QOL is particularly related to seizure frequency, anxiety and depression (Jacoby, 1994).

Seizure Frequency The goal of epilepsy treatment has been the attainment of a seizure-free or near seizurefree status (Brodie et al 1999). In fact a number of studies have suggested that seizure frequency may be the ‗gold standard‘ against which the success or otherwise of epilepsy treatments is measured (Martin et al. 2003). Other researchers have suggested that seizure frequency is at best a rough estimate of improved condition (Kim et al., 2003). Many studies incorporating seizure count as a measure of outcome have been based upon the assumption that most patients will only have an improvement in quality of life if seizure free, however, this overlooks other important components that add to QOL in epilepsy, such as remission of depression or improvement in AED side effects (Auriel et al., 2009; Wheless, 2006). Nonetheless, the relationship between seizure frequency and QOL is an important one, with greater seizure control being consistently associated with better quality of life (Jacoby 1994; Maganti et al., 2003). Support for the importance of attaining seizure control as an aid to improving QOL has been derived from a large number of studies (Baker et al., 1998; Birbeck et al. 2002; Buck et

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al., 1999; Staven et al., 2000). A large cross sectional European study (Buck et al 1999) reported that three factors were consistently associated with QOL in epilepsy: seizure frequency, seizure type and employment status. Comparison of QOL pre and post operatively in epilepsy surgery patients indicated that patients who became seizure free or who experienced simple partial seizures, with no impairment of consciousness, had better QOL than patients with either continuing seizures or seizures with impaired consciousness (Vickrey et al., 1994). Other researchers have suggested that QOL may actually worsen over time in epilepsy surgery patients who have less than a 90% reduction in seizure frequency after surgery (McLachlan et al., 1997). It would appear that there is no satisfactory seizure rate for patients, with the negative impact of even infrequent seizures being unacceptable because of limitations in activities of daily living, such as driving and employment (Gilliam and Kanner, 2002). Similarly, people with frequent seizures are more likely to report feeling stigmatised than those who are seizure free (Baker et al., 2005). The impact of seizure frequency on QOL may be mediated through its effect on psychological state, especially depression. It has been estimated that depressive disorders are frequently associated with uncontrolled seizures, with a reported prevalence of up to 50% (Gilliam and Kanner, 2002). However, some researchers have suggested that this relationship is only apparent in seizures which do not involve disruption of consciousness (e.g. partial seizures). One reason for this may be that depression can be relieved by tonic-clonic seizures which mimic the effects of electro convulsive therapy (Harden, 2002). Evidence of the relationship among QOL, seizure frequency and depression presents a somewhat confusing picture. In a review paper, Cramer (2002) stated that depression was consistently associated with poor QOL, regardless of seizure type or frequency. Recently, Attarian et al. (2003) studied the relationship between seizure frequency and depression in 143 outpatients from an epilepsy clinic. In this sample, 10% with intractable seizures were depressed and 11% with controlled seizures were depressed. There were no significant differences in the prevalence of depression between those with uncontrolled seizures and participants whose seizures were controlled. In contrast, a large study involving 696 community dwelling epilepsy patients in a primary care setting reported that seizure frequency was a significant predictor of depression (Baker et al., 1996). Similarly, Jacoby et al. (1996) reported a clear relationship between current level of seizure activity and the psychological well-being of their participants. While 9% of their overall sample was depressed, the percentage increased from 4% among seizure free individuals to 21% among those reporting frequent (1 or more per month) seizures. More recently, O‘Donoghue et al. (1999) reported that 33% of primary care patients with intractable epilepsy and 6% with no seizure activity had depression. The prevalence of depression in people with epilepsy may vary according to the severity and frequency of their seizures and whether they are treated in primary or tertiary care centres. Lambert and Robertson (1999), studied participants recruited from a tertiary care centre, and reported that depression was evident in up to two-thirds of patients with medically intractable epilepsy (that is, frequent, uncontrolled seizures). Although this section is not addressing issues associated with medications, a few comments are necessary. A number of AEDs have been used in the general population specifically to treat mood disorders, in particular valproate and lamotrigine. In a recent trial, lamotrigine was found to improve mood states in patients with epilepsy without any concurrent alteration in seizure frequency (Cramer et al., 2004), while another reported an

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inverse correlation between adverse medication effects and QOL (Gilliam, 2002). The discontinuation of an AED with mood stabilizing properties for one which may provide more efficacious seizure control may lead to increased depression. Thus, a treatment focus on seizure reduction may have the paradoxical effect of causing a worsening of depression and consequent reduction of QOL. People with epilepsy whose seizures are refractory may experience the belief that their lives are out of control and they are thus helpless to alter the outcome of their disorder. Such an attitude of learned helplessness could generalise to many aspects of their life as a perception that behaviour cannot produce a desired outcome (Seligman, 1972). The loss of control that is characteristic of epilepsy has not been well studied (Chovaz et al., 1994), however, it would be reasonable to assume that a history of unpredictable, uncontrollable, aversive events such as seizures would produce behaviour that would accord with the learned helplessness paradigm. However, not all researchers have concluded that seizure frequency is the most important aspect of a treatment program for people with epilepsy. QOL and psychosocial outcomes may improve even where seizure outcome has been less than optimal (Jones et al., 2002). A recent study (McLachlan et al., 2003) assessing the effectiveness of vagus nerve stimulation in a group of people with intractable epilepsy reported a clinically substantive improvement in quality of life with no concomitant decrease in seizure frequency. The participants in this study were however able to reduce their medication dosage, suggesting that their seizures were less severe than they had been prior to surgery. It may be seizure severity rather than frequency which has a greater impact on QOL. Over a number of years there has been an acknowledgement among researchers and clinicians within the epilepsy field that there are outcomes from treatment programs that are not necessarily reflected by a reduction in the number of seizures that occur in patients (Privitera and Flicker, 2004). Reflecting a changing attitude to the role of seizure frequency in QOL, the Commission on Outcome Measurement in Epilepsy (Baker et al. 1998) recommended that seizure frequency not be relied on solely as an outcome measure of epilepsy, but it should from part of a more comprehensive index including quality of life measures.

Conclusion There is strong evidence that people with epilepsy have poorer QOL than people without epilepsy and this has been clearly and consistently demonstrated across countries and age groups. Adults with epilepsy have reported QOL which is significantly poorer than normal controls (Langfitt, 1995; Nubukpo et al. 2004) and comparable with other chronic conditions (Kobau et al. 2007; Lau et al. 2001). Where epilepsy is complicated by the presence of psychological distress, social dysfunction, perceptions of stigma or other comorbid condition, people experience a substantial burden in terms of impairment of physical and mental wellbeing (Elliott et al., 2009; Kobau et al., 2007). Understanding the impact of epilepsy on QOL has important implications for the development of treatment programs, which currently are increasingly problem-oriented and focus mainly on pharmacological management of seizures (Pulsipher et al., 2006). Schacter

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(2000) has asserted that the goal of treating people with epilepsy should be to attain a life without the medical or psychosocial complications of seizures. It has become clear that providing enhanced QOL is integral to a complete treatment program for people with epilepsy. Evidence from the literature tends to suggest that unless a person with epilepsy is treated holistically, that is incorporating dimensions of quality of life and psychological and social functioning, medical interventions will not achieve the best possible outcome for the patient. It is essential for health professionals involved in the treatment and management of people with epilepsy to acknowledge the importance that their patients may place on aspects of daily functioning that may extend beyond seizure freedom (Sander, 2005). Alleviating psychological distress, improving social functioning and providing social support will all contribute to enhancing the QOL of people with epilepsy and consideration of these important aspects of treatment should form the basis of an holistic management program. Only by listening carefully to our patients with epilepsy can we share their understanding of quality of life and collaborate with them to achieve outcomes which most closely align with that understanding. ―Quality of life requires that people‘s basic and social needs are met and that they have the autonomy to choose to enjoy life, to flourish and to participate as citizens in a society with high levels of civic integration, social connectivity, trust and other integrative norms, including at least fairness and equity…….” (Phillips, 2006, pp.242)

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DeCosta, J.R. (1998). Psychosocial adjustment to seizure disorders: Assessment and implications for psychotherapy. Psychotherapy in Private Practice, 17, 55-71. Dell, J.L. (1986). Social dimensions of epilepsy, stigma and response. In S.H. Whitman (Ed.), Psychopathology in epilepsy, social dimensions (pp. 185-210). New York: Oxford University Press. Devinsky, O. (2005). Quality of life in the elderly with epilepsy. Epilepsy and Behavior, 6, 13. Devinsky, O. and Cramer, J.A. (1993). Introduction: Quality of life in epilepsy. Electroencephalography and Clinical Neurophysiology, 34, (Suppl. 4). S1-S3. Dodrill, C.B. (1997). Cognitive and adjustmental consequences of seizures and antiepileptic drugs in the elderly. In A.J. Rowan (Ed.), Seizures and epilepsy in the elderly, (pp. 179190). Newton,MA: Butterworth-Heinemann. Dodrill, C.B. and Batzel, L.W. (1993). Assessment of psychosocial and emotional factors in epilepsy. In D.L. Mostofsky, (Ed.), The Neurobehavioral Treatment of Epilepsy, (pp. 265-282). Hillsdale: Lawrence Erlbaum and Associates. Elliott, J.O., Lu, B., Shneker, B., Charyton, C. and Moore, J.L. (2009). Comorbidity, health screening and quality of life among persons with a history of epilepsy. Epilepsy and Behavior, 14, 125-129 Fisher, R.S. (2000). Epilepsy from the patient‘s perspective: Review of results of a community-based survey. Epilepsy and Behavior, 1, 9-14. Gilliam, F. and Kanner, A.M. (2002). Treatment of depressive disorders in epilepsy patients. Epilepsy and Behavior, 3, (Suppl. 1), 2-9. Harden, C.L. (2002). The co-morbidity of depression and epilepsy: epidemiology, etiology and treatment. Neurology, 59, (Suppl. 4), S48-S55. Hermann, B.P. (1992). Quality of life in epilepsy. Journal of Epilepsy, 5,153-165. Hermann, B.P. and Whitman, S. (1992). Psychopathology in epilepsy: The role of psychology in altering paradigms of research, treatment and prevention. American Psychologist, September, 1134-1138. Jacoby, A. (1994). Felt versus enacted stigma: A concept revisited. Social Science and Medicine, 38, 269-274. Jacoby, A. and Baker, G.A. (2008). Quality-of-life trajectories in epilepsy: A review of the literature. Epilepsy and Behavior, 12, 557-571. Jacoby, A., Baker, G.A., Steen, N., Potts, P. and Chadwick, D.W. (1996). The clinical course of epilepsy and its psychosocial correlates: Findings from a UK community study. Epilepsia, 37, 148-161. Jacoby, A., Chadwick, D.W. and Doughty, J. (2001). Social consequences of epilepsy: findings from the UK MRC study of early epilepsy and single seizures. Epilepsia, 42, (Suppl. 2), S9-S13. Johnson, E.K., Jones, J.E., Seidenberg, M. and Hermann, B. (2004). The relative impact of anxiety, depression and clinical seizure features on health-related quality of life in epilepsy. Epilepsia, 45, 544-550. Jones, J.E., Berven, N.L., Ramirez, L., Woodard, A. and Hermann, B.P. (2002). Long-term psychosocial outcomes of anterior temporal lobectomy. Epilepsia, 43, 896-903. Kanner, A.M. (2003). Depression in epilepsy: A frequently neglected multifaceted disorder. Epilepsy and Behavior, 4, 11-19.

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Kanner, A.M. and Barry, J.J. (2001). Controversies in Epilepsy and Behavior: Is the psychopathology of epilepsy different from that of nonepileptic patients? Epilepsy and Behavior, 2, 170-186. Kanner, A.M. and Nieto, J.C. (1999). Depressive disorders in epilepsy. Neurology, 53, (Suppl. 2), S26-S32. Kanner, A.M. and Palac, S. (2000). Depression in epilepsy: A common but often unrecognised comorbid malady. Epilepsy and Behavior, 1, 37-51. Kim, S., Hays, R.D., Birbeck, G. and Vickrey, B. (2003), Responsiveness of the Quality of Life in Epilepsy Inventory (QOLIE-89) in an antiepileptic drug trial. Quality of Life Research, 12, 147-155. Kobau, R., Zahran, H., Grant, D., Thurman, D.J., Price, P.H. and Zack, M.M. (2007). Prevalence of active epilepsy and health-related quality of life among adults with selfreported epilepsy in California: California Health Interview Survey, 2003. Epilepsia, 48, 1904-1913. Kramer, G. (2001). Epilepsy in the elderly: Some clinical and pharmacotherapeutic aspects. Epilepsia, 42 (Suppl. 3), S55-S59. Kuhn, K., Quednow, B.B., Thiel, M., Falkai, P., Maier, W. and Elger, C.E. (2003). Antidepressive treatment in patients with temporal lobe epilepsy and major depression: A prospective study with three different antidepressants. Epilepsy and Behavior, 4, 674679. Kuyken, W. (1995). The World Health Organisation quality of life assessment (WHOQOL): position paper from the World Health Organisation. Social Science and Medicine, 41, 1403-1409. Lambert, M.V and Robertson, M.M. (1999). Depression in epilepsy: etiology, phenomenology and treatment. Epilepsia, 40, (Suppl. 10), S21-S47. Langfitt, J.T. (1995). Comparison of the psychometric characteristics of three quality of life measures in intractable epilepsy. Quality of Life Research, 4, 101-114. Lau, V. W., Lee, T. M., Ng, P. K., and Wong, V. C. (2001). Psychosocial adjustment of people with epilepsy in Hong Kong. Epilepsia, 42, 1169-1175. Lee, S.A., Yoo, H.J. and Lee, B.I. (2005). Factors contributing to the stigma of epilepsy. Seizure, 14, 157-163. Lewis, A.J. (1934). Melancholia: A historical review. Journal of Mental Science, 80, 1-42. Loring, D., Meador, K. and Lee, G. (2004). Determinants of quality of life in epilepsy. Epilepsy and Behavior, 5, 976-980. Leventhal, H. and Colman, S. (1997). Quality of life: A process view. Psychological Health, 12, 753-767. Maganti, R., Rutecki, P., Bell, B., Woodard, A., Jones, J.C., Ramirez, L. and Iskandar, B. (2003). Epilepsy surgery outcome among US veterans. Epilepsy and Behavior, 4, 723728. Martin, R., Vogtle, L., Gilliam, F., and Faught, E. (2003). Health-related quality of life in senior adults with epilepsy: What we know from randomized clinical trials and suggestions for future research. Epilepsy and Behavior, 4, 626-634. McLachlan, R.S., Rose, K.J., Derry, P.A., Bonnar, C., Blume, W.T. and Girvin, J.P. (1997). Health-related quality of life and seizure control in temporal lobe epilepsy. Annals of Neurology, 41, 482-489.

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McLachlan, R.S., Sadler, M., Pillay, N., Guberman, A., Jones, M., Wiebe, S. and Schneiderman, J. (2003). Quality of life after vagus nerve stimulation for intractable epilepsy: Is seizure control the only contributing factor? European Neurology, 50, 16-19. McLaughlin, D., Pachana, N. and McFarland, K. (2008a). Stigma, seizure frequency and quality of life: The impact of epilepsy in late adulthood. Seizure, 17, 281-287. McLaughlin, D., Pachana, N. and McFarland, K. (2008b). Depression in a communitydwelling sample of older adults with late-onset or lifetime epilepsy. Epilepsy and Behavior, 12, 281-285. Mendez, M.F. and Doss, R.C. (1992). Ictal and psychiatric aspects of suicide among epileptics. International Journal of Psychiatric Medicine, 22, 231-238. Mirnics, Z., Bekes, J., Rozsa, S. and Halasz, P. (2001). Adjustment and coping in epilepsy. Seizure, 10, 181-187. Mozes, B., Maor, Y., and Shmueli, A. (1999). Do we know what global ratings of healthrelated quality of life measure? Quality of Life Research, 8, 269-273. Nubukpo, P., Clement, J. P., Houinato, D., Radji, A., Grunitzky, E. K., Avode, G., and Preux, P. M. (2004). Psychosocial issues in people with epilepsy in Togo and Benin (West Africa) II: Quality of life measured using the QOLIE-31 scale. Epilepsy and Behavior, 5, 728-734. O'Donoghue, M. F., Goodridge, D. M., Redhead, K., Sander, J. W., and Duncan, J. S. (1999). Assessing the psychosocial consequences of epilepsy: a community-based study. British Journal of General Practice, 49, 211-214. Phillips, D. (2006). Quality of life: Concept, policy and practice. Abingdon: Routledge. Privitera, M. and Ficker, D.M. (2004). Assessment of adverse events and quality of life in epilepsy: design of a new community-based trial. Epilepsy and Behavior, 5, 841-846. Pugh, M.J., Copeland, L.A., Zeber, J.E., Cramer, J.A., Amuan, M.E., Cavazos, J.E. and Kazis, L.E. (2005). The impact of epilepsy on health status among younger and older adults. Epilepsia, 46, 1820-1827. Pulsipher, D.T., Seidenberg, M., Jones, J. and Hermann, B. (2006). Quality of life and comorbid medical and psychiatric conditions in temporal lobe epilepsy. Epilepsy and Behavior, 9, 510-514. Robertson, M.M. (1997). Suicide, parasuicide and epilepsy. In J. Engel and T.A. Pedley (Eds.), Epilepsy: A comprehensive textbook. Philadelphia: Lippincott-Raven. Rogerson, R. (1995). Environmental and health related quality of life: conceptual and methodological similarities. Social Science and Medicine, 41, 1373-1382. Sander, J.W. (2005). Ultimate success in epilepsy – the patient‘s perspective. European Journal of Neurology, 12, (Suppl.4), 3-11. Scambler, G. and Hopkins, A. (1986). Being epileptic: Coming to terms with stigma. Sociology, Health and Illness, 8, 26-43. Schacter, S.C. (2000). Epilepsy: Quality of life and cost of care. Epilepsy and Behavior, 1, 120-127. Schackleton, D.P., Kasteleijn-Nolst Trenite, D.G., de Craen, A.J., Vandenbroucke, J.P. and Westendorp, R.G. (2003). Living with epilepsy. Long term prognosis and psychosocial outcomes. Neurology, 61, 64-70. Selai, C.E. and Trimble, M.E. (1995). Quality of life assessment in epilepsy: The state of the art. Journal of Epilepsy, 8, 332-337. Seligman, M.E. (1972). Learned helplessness. Annual Review of Medicine, 207-412.

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Senol, V., Soyuer, F., Arman, F. and Ozturk, A. (2007). Influence of fatigue, depression and demographic, socioeconomic and clinical variables on quality of life of patients with epilepsy. Epilepsy and Behavior, 10, 96-104. Spencer, S.S. and Hunt, P.W. (1996). Quality of life in epilepsy. Journal of Epilepsy, 9, 3-13. Staven, K., Loge, J.H. and Kaasa, S. (2000). Health status of people with epilepsy compared with a general reference population. Epilepsia, 41, 85-90. Suurmeijer, T., Reuvekamp, M. and Aldenkamp, B. (2001). Social functioning, psychological functioning and quality of life in epilepsy. Epilepsia, 42, 1160-1168. Szaflarski, J.P. and Szaflarski, M. (2004). Seizure disorders, depression and health-related quality of life. Epilepsy and Behavior, 5, 50-57. Tallis, R. (1993). Through a glass darkly: Assessing the quality of care of older people using quality of life measures. In Anon. (Ed.), Quality of Life and Quality of Care in Epilepsy (pp. 79-86). London: London Royal Society of Medicine Services. Tallis, R. (1997). Antiepileptic drug trials in the elderly: Rationale, problems and solutions. In A.J. Rowan (Ed.), Seizures and epilepsy in the elderly. (pp. 311-319). Newton, MA: Butterworth-Heinemann. Tracy, J., Dechant, V., Sperling, M., Cho, R. and Glosser, D. (2007). The association of mood with quality of life ratings in epilepsy. Neurology, 68, 1101-1107. Trostle, J. (1997). Social aspects: Stigma, beliefs and measurement. In J.P. Engel, (Ed.), Epilepsy: A comprehensive textbook. (pp. 2183-2189). Philadelphia: Lippincott-Raven. Vickrey, B.G., Hays, R.D., Rausch, R., Sutherling, W.W., Engel, J. and Brook, R.H. (1994). Quality of life of epilepsy surgery patients as compared with outpatients with hypertension, diabetes, heart disease and/or depressive symptoms. Epilepsia, 35, 597607. Wheless, J.W. (2006). Intractable epilepsy: A survey of patients and caregivers. Epilepsy and Behavior, 8, 756-764. Zeber, J., Copeland, L. Amuan, M., Cramer, J. and Pugh, M. (2007). The role of comorbid psychiatric conditions in health status in epilepsy. Epilepsy and Behavior, 10, 539-546.

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter V

Addressing the Treatment Gap in Epilepsy Christine Walker

Chronic Illness Alliance, Australia

Abstract In a previous work ―Who Gets Treatment for Epilepsy? The Political Economy Of The Treatment Gap‖ (2009) I examined some of the inadequacies of the analyses around the treatment gap and proposed that a broader political economy of health approach which includes an understanding of the place of epilepsy in global health inequalities will yield another direction to address both the gross and relative inadequacies in the care of people with epilepsy in both developing and developed economies. In this chapter I ask the question ―Why does the treatment gap in epilepsy continue when all evidence suggests that there are safe, cost-effective ways to treat epilepsy which will result in improving the lives of millions of people with epilepsy in developing countries?‖ To answer this question I explore some of the problems relating specifically to health systems which contribute to existing gaps in the treatment of epilepsy. I explore some structural health reforms that would assist in closing the treatment gap.

Introduction In 1997 the World Health Organisation, International League against Epilepsy and the International Bureau for Epilepsy established the ‗Global Campaign Against Epilepsy: Out of the Shadows‘ (WHO 1997) to address the treatment gap in epilepsy. The treatment gap is defined as the number of people with active epilepsy not on treatment or on inadequate treatment, expressed as a percentage of the total number with active epilepsy (Mbuba et al 2008).  Correspondence: Dr Christine Walker, Chronic Illness Alliance Inc, 818 Burke Rd, Camberwell, Victoria, Australia 3124. Tele: 61 3 9882 4654. Email: [email protected].

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Epilepsy is estimated to affect some 50 million people in the world, four-fifths of whom live in developing countries (Mbuba et al 2008). It is estimated that in developing countries 90% of those with epilepsy receive either no treatment, inappropriate treatment or are undertreated (WHO 1997; Meinardi et al 2001; Cruz 2005). However, studies into cost-effective means to alleviate the treatment gap demonstrate that low cost Anti-Epileptic Drugs (AED) could lower the burden of epilepsy in developing countries (Laxminarayan et al 2006). Chisholm (2005: 756) concluded that ―purely from an efficiency point of view, the most costeffective technology for reducing this burden is first-line treatment in primary care with older AEDs…‖. In this chapter I explore the continuing treatment gap as part of the overall health system in developing countries. Some countries have initiated health reforms to reduce the burden of diseases amongst their poor. But treatment gaps in all conditions including epilepsy continue despite the fact that the tools to improve health, such as mass immunisation and public health measures are so effective and inexpensive that even major improvements can be made in countries where income is low (Jamison 2006). Chisholm (2005) estimated the cost-effectiveness of first –line treatments in epilepsy on terms of disability-adjusted life years (DALY) across the WHO regions. He concluded that the burden of epilepsy could be significantly reduced in developing countries by scaling up the availability of front-line AEDs. The lower acquisition cost of drugs such as Phenytoin (PHT) and Phenobarbitone (PB) made them the more attractive choices. While Chisholm was aware of the limitations of his modelling, including the assumption that epilepsy was a homogenous condition across all the WHO regions, he was even more aware that the supply and distribution of cost-effective AEDs depended on more than simply demonstrating their value. In his conclusion he identified that cost-effectiveness analysis belongs in the broader context of priority setting including the training and supervision of primary health workers and an efficient and continuous supply of AEDs. These issues belong to a structural analysis of the distribution and supply of AEDs in health systems. For the purpose of this analysis I identify the structural components of health systems that will impact on the supply and distribution of AEDs in developing countries as: health policies of financing and resourcing; the place of primary health and the standard of its health workforce in the overall health system and access to medicines in the health system.

Health Policies Regarding Health Financing and Priorities of Resources Health structures vary across the world due to the influence of government policies and government resourcing of a nation‘s health system. Barriers to equity in health for the poor are a characteristic of developing countries. There have been many attempts to reduce this inequity through health policies (WHO 2009:1). The WHO says: ‗It is now well understood that poor, vulnerable and socially excluded groups have a higher burden of disease, while at the same time having worse access to and lower utilization of health services…‘(WHO 2009: 2).

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These barriers to access may be reduced through policies that direct greater resources to reduce them such as: (1) using public subsidies specifically for poor or excluded groups of people. This may require the additional restructuring of health services such as primary care services for the poor or more rural services or more basic services; (2) reducing user fees and establishing systems of national health insurance; (3) using health contracting (where a contract between the funders and providers of services exsits in order to improve performance and service delivery) instead of user fees. The need to restructure health services, that is finance some services in favour of others, in order to have fairness in health care, is evident when one realises that nearly three quarters of health funding comes from out of pocket funds in poor countries whereas in Europe just a quarter comes from this source. As a percentage of GDP, health expenditure is more than twice as much in high income countries than in low income or developing countries (Jamison 2006). Low-income countries spend some 5% of their GDP on health which in exchange-rate based US dollars per capita total health spending is $22 while high-income countries spend 10% which in the same terms is $3000 per capita (Scheiber et al 2006). Jamison (2006) argues that there is evidence to show that public funding, perhaps administered through contracting, imposes efficiencies on health systems, so that resources can be directed to provide the greatest benefit, whereas out of pocket payments create perverse incentives to treat the wealthier members of a society. Out of pocket payments are the most inequitable means to fund a health system (Somkotra and Lagrada 2008). Many developing countries have become increasingly dependent on donor aid. This creates problems in sustainable planning since donor funds are generally for short term projects and, additionally, may contribute to prolonging internal inefficiencies and corrupt practices. Donor aid tends to create greater inefficiencies since donations are directed towards specific conditions and not to the needs of the overall population (Scheiber et al 2006). Of the 23 countries for which donor assistance plays a significant role in their health financing 15 of them are African countries (Scheiber et al 2006). These are the challenges for developing countries concerned to create greater health equality to decide where the limited health finances must be directed. There are examples of developing countries that have undertaken this challenge. In Thailand before 2001, Thai health care was funded by several different schemes. One was a social welfare scheme for low income households, another covered state employees, another was a contributory scheme between private employers, their employees and the government and a fourth was developed to cover those not eligible for social welfare, such as those who were not part of the formal economy (Somkotra and Lagrada , 2008). Despite these schemes, only 70% of the population was covered and there was evidence that out of pocket costs were still required, this falling most heavily on the poor who could least afford them (Somkotra and Lagrada 2008). A Universal Coverage Scheme (UCS) commenced in 2001 to address the inefficiencies of different insurance schemes with the objective to remove the financial barriers to health care for all Thai citizens. There are now three health financing schemes in operation (Somkotra and Lagrada 2008). These schemes are based on medical and health needs rather than the employment status of the citizens. One scheme provides outpatient and inpatient care through fee for service reimbursement, while another provides health benefits for outpatient and inpatient care at registered public or private facilities through capitation (that is where health service providers receive a fixed sum for a number of services they provide to a patient). The third scheme provides outpatient or inpatient care at a public or

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private primary health care unit. Somkotra and Lagrada established that in the two decades before the UCS was introduced the poor in Thailand carried a disproportionate financial burden from out of pocket costs. This declined after the introduction of the UCS which now provides a measure of both health and financial protection to poorer families in times of economic decline (Somkotra and Lagrada 2008). Thailand‘s UCS is an example of how a middle-income country‘s health system may be restructured through health financing. Cambodia, a low income country, provides an example of improving access to health services for the poor (WHO 2009). Like Thailand, Cambodia has a policy of providing equitable access to health services for all of its citizens. Services however, are not free in Cambodia and this meant the Cambodian Ministry of Health undertook structural change through the application of multiple health financing strategies. The history of attempts in Cambodia to improve access to health services is instructive because it demonstrates the organic nature of health system restructuring. When Cambodia began to restructure after the Khmer Rouge regime the public health system required extensive rehabilitation (WHO 2009). The poor quality of the public health sector meant that there was high reliance on the more expensive private sector which was largely funded by out of pocket costs. In 1997 the Government introduced user fees as a means of revenue-raising to improve public health services, accompanied by a policy of exemption from fees for poor people. It was only partially successful, working well in health centres but mainly benefiting better off Cambodians in hospital admissions since the exemption rates were related to improved staff conditions. This created a perverse incentive where staff had an interest in as many patients as possible paying fees. In 1999 the Cambodian Government introduced a contracting system in the more remote districts. Non-government organisations were contracted to provide services. Contracting systems were modified over time and in 2003-4 were extended to other districts. Despite some problems contracting has improved services in these districts and there is increased use by poor households. However there are still concerns about equity of access (WHO 2009). Health Equity Funds (HEF) identify the poor and pays for services on their behalf. HEFs were piloted in 2000 as a means to address these issues of equity of access for Cambodia‘s poor. Those eligible for HEF receive full or partial support for the costs of user fees, for their transport and other health care related costs. This was found to be partially successful in terms of reducing the burden of ill-health on the poor as well as being a cost-effective means of providing tertiary care services. Since 2006 the Government has made State budget allocations for the reimbursement of the poor of user fees (WHO 2009). Cambodia has also introduced a system of health insurance for public and private sector (including the informal sector) employees. However, Khun and Manderson (2008) in an article on dengue fever in Cambodia have demonstrated that user fees require reviewing since poor families may be reduced to poverty including having to sell their land or take out loans they cannot repay in order to purchase care for their children. This suggests that where user fees or other out of pocket costs remain part of government policy for revenue-raising for the health system the poor continue at risk. Vietnam has a similar history of trying to both improve health services through user fees but mitigating the burden of those fees on the poor. Introducing user fees in 1989, it soon became apparent that these made health services too expensive for the poor. Exemptions were not always successful because health services had no alternative source of funding. In 2002 the Government undertook to support the poor in paying for their own healthcare from the

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State budget (WHO 2009). However, out of pocket payments by households still provide some 30% of the total health financing revenue, where ‗virtually all health care services require payment‘. National health insurance has also been introduced and from 2006 it covers the poor through central government subsidies since provincial governments could not generate the funds to cover the poor and at the same time finance regional health facilities (WHO 2009). The authors of this report emphasise that political will and commitment underpin Vietnam‘s health restructuring where there is an aim to achieve universal health insurance by 2010. Continuous monitoring of the reforms to ensure that the poor receive free health care, that provincial governments implement the policies and have the funds to do so has been introduced. Heavy reliance on user fees and other out of pocket payments as a cornerstone of health financing remains a problem in many developing countries. Both India and China, whose economies are growing, continue with these models. The rural poor of China account for some 58% of the total population but receive proportionately fewer health services. Even though the Chinese Government has attempted to remedy this through the introduction of the New Cooperative Medical Service (NCMS) Scheme in which households contribute a low premium to an insurance scheme in order to receive reimbursement of their costs, reimbursement levels are low (around a quarter of the costs) and out of pocket payments continue at a catastrophic level for the poor (WHO 2009). India‘s poor have similar problems of facing catastrophic out of pocket payments at times of illness. Jilani et al (2009) point out: ‗Despite being the second fastest growing major economy in the world, (with a GDP growth rate of 9.4% for the fiscal year 2006–2007) public spending on health care is among the lowest in the world. According to National Health Accounts total expenditure on health care is only 4.63% of Gross Domestic Product (GDP) out of which only 20% is public financed and rest 80% is private expenditure, mostly out of pocket expenses. India ranks among the top 20 in its private spending on health care out of which 82% is from personal out of pocket money, employers pay for 9% of spending on private care and health insurance share is only 5-10%. …In the absence of any comprehensive health insurance coverage and increasing cost of health care more than 40% of all patients admitted to hospital have to borrow money or sell assets, including inherited property and farmland, to cover expenses, and 25% of farmers are driven below the poverty line by the costs of their medical care.‘

The Need for Improved Primary Care Systems in Developing Countries ‗There is no question that part of improving health in poorer countries, as in richer, is the provision of comprehensive primary care.‘ M Marmot, Clinical Medicine 2006.

Radhakrishnan (2009) points out that developing countries have few resources to tackle the treatment gap in epilepsy. Health resources which include physical infrastructure, budgets and workforce are generally scarce and unevenly distributed, with many of these resources concentrated in urban tertiary facilities. Such facilities benefit the urban economically

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advantaged, whereas the majority of poorer people in developing countries live in isolated rural areas (Radhakrishnan 2009). Care of the rural poor in developing countries is thus left to an already overstretched local health workforce with little or no knowledge of epilepsy or indeed other conditions, often no diagnostic tools or treatments. This means that traditional healers remain important sources of care amongst many rural poor (Baskind and Birbeck 2005; Mbuba and Newton 2009; Nizamie et al 2009). Some understanding of how this uneven distribution of infrastructure impacts on the poor in developing countries may be gained from the survey of epilepsy resources conducted in the Western Pacific Region (WHO 2004). This survey was completed by 25 of the 37 countries and demonstrated that only 9 of those 25 countries in the region had medical specialists in epilepsy. The 25 respondents identified that there were difficulties in all their countries regarding diagnosing and treating epilepsy including compliance and access to AEDs; suitable treatment infrastructure such as diagnostic tools and hospitals; lack of government funding and high levels of stigma and discrimination against people with epilepsy. Poorer or developing countries including the Marshall Islands, Niue, Fiji and Micronesia reported having no epilepsy professionals, while other countries, for example, Mongolia and Laos reported two and one respectively. Laos, where the treatment gap is an estimated 90%, provides an interesting case study (Barennes et al 2008). Laos is largely rural and extremely poor with gross national income of $US 490 per capita (WHO 2004a) and with 60% of health related costs met by out of pocket payments (Barennes et al 2008; WHO 2009). Only 10% of health care costs are covered by the government and the rest by international donors. With an estimated 50,000 people having epilepsy in Laos, the number receiving regular treatment in the capital Vientiane was twelve (Barennes et al 2008). Health care services in Laos are generally public services with low levels of qualified staff. Private services are largely pharmacies in urban areas. Qualified staff which includes the one neurologist and one neurosurgeon, tends to work in the economically better off areas so that the rural poor whose access to health facilities is made more difficult by the mountainous terrain of Laos, rely on volunteer village workers and traditional healers. A similar picture emerges in India, despite it economic growth over recent years. The prevalence rate of epilepsy is estimated at 8.8 per 1000 being twice as great in rural areas as in urban areas (Gouri-Devi et al 2003; Nizamie et al 2009). There are some 5 million people with epilepsy in India. There are too few neurologists, all of whom practice in urban areas to meet the need of this population. Health care is delivered across the Indian states through tertiary hospitals, primary health centres, community health centres and sub centres. This vast network has been created to assist meeting the health needs of the 80% of Indians living in rural India. While public health services are free to the poor there are costs involved, notably in medicines and travel to treatment centres (Radhakrishnan 2009). In India and Laos as with other developing countries the Western model of epilepsy care which is characterised by a vertical structure of referrals between primary care and specialist neurology care is not feasible. Gouri-Devi et al (2003) estimate that the minimum number of neurologists required in India to meet the needs of people with epilepsy would be 5000. With 650 neurologists working in India in 2003, it would take half a century to reach the goal of 5000 neurologists, based on training one hundred per year. They conclude there is a need to create different models to deal with epilepsy grounded in the Indian health system. As in India, the primary care system and the community level have been identified as where epilepsy must be grounded in most developing countries.

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‗In developing countries, epilepsy requires a deliberate, sustained, skilled effort by health workers, especially at the community level, to enhance access to regular treatment and to motivate patients to continue treatment‘. WHO 2004: 24.

The starting point is therefore strengthening the primary care system to work at the community level to meet the needs of a local population, including those with epilepsy. Laos, once again provides an example of a project to strengthen primary care as the most costeffective means to bring health care to the rural poor. In the 1990s Laos‘ health ministry recognised that its primary care system simply delivered generic services from either its central ministry or the regional offices to the rural poor. Such undifferentiated programs did not allow for local differences or local engagement. This often led to alienation of the local populations (WHO 2009). By 2001 the Government recognised that primary care projects specifically designed to work with local communities would be more successful (WHO 2009). The Sayaboury project (WHO 2009) began with maternal and child health services but became the point from which other services such as management of childhood illnesses, clearly relevant to childhood epilepsy, were developed or strengthened to work at district level. District hospitals were provided with equipment and staff trained to handle referrals from the village level. Management teams then trained voluntary village workers, dispensary workers and traditional birth attendants. Mobile health teams were trained and visited villages at least twice a year to deliver health education in local languages and provide a range of services such as immunisation, family planning advice and treatments. More recently this task of strengthening primary care at the district and village level has been extended to other remote districts in Laos (WHO 2009). Barennes et al (2008) situated their project of training general health workers in neurological conditions, providing more neurologists and epilepsy services at a provincial level within this developing framework. The aim is to sustain this by integrating the outcomes of the project into the mainstream primary care services. (Barennes et al 2008). In India health reform has been taking place for some decades with government policies focussing on strengthening primary care which takes place at the district and local levels. Gouri-Devi et al (2003) consider that this is where epilepsy care must be located. Previous projects which used general practice or extended services into rural areas were found to be unsustainable. Gouri-Devi et al (2003) argue for a district model of epilepsy treatment which provides training to doctors in district hospitals who then provide training to doctors in primary care centres, thus enabling appropriate referrals between primary care and district hospitals. In addition state health administrators were ‗sensitized‘ to the public health issues of epilepsy. This approach allowed for the strengthening of existing services and the development of new ones. Tools such as training manuals, educational materials in local languages and ongoing training were all part of this process. Baskind and Birbeck (2005), Mbuba and Newton (2009) and Berhanu et al (2009) point out that many communities still believe that traditional treatments are more effective than Western medicine employing AEDs. This is partly related to the difficulties of accessing AEDs when health centres are at a distance from remote villages but also because there is a degree of social and cultural familiarity with traditional healers. One project provides an example of integrating traditional healers into care model rather than isolating them and risking loss of community support for the use of AEDs. Nizamie et al (2009) conducted a project in a remote tribal community in India in which they engaged the cooperation of faith

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healers, by far the more numerous health care option, at the outset. In this project faith healers were given training and attended discussion sessions, agreeing they would continue their usual practices with the exception of supplying their herbal medicines and referring their clients to epilepsy camps where they received AEDs. Effective epilepsy treatment requires it be integrated into a strong primary care system which remote communities can access, and this is also predicated on a primary care system that takes into account local cultural needs including resources in local languages and traditional healers. Regrettably however, effective epilepsy treatment may not be integrated into a primary care system in the foreseeable future, since it has a lower priority. Pardeshi (2009) argues that primary health care integrates preventive, promotional, curative and rehabilitation services. It includes education to help prevent and control major health issues; it promotes sanitation and a good food supply, immunisation and maternal and child health as well as the provision of essential drugs. Primary care in developing countries must address first and foremost those conditions defined as critical public health risks. In Africa the challenges for primary care are malaria, which kills an estimated 400,000 people a year, complications from pregnancy and childbirth, where some 350,000 die each year and increasing ‗Western‘ diseases such as stroke and diabetes (Duval Smith, 2009). In addition, there are the many other tropical diseases such as dengue and hookworm infections (Hotez et al 2009). All of these problems are associated with poverty and poor living conditions. Resources including funds, staffing and medicines remain in short supply to deal with these conditions in most developing countries. Awofeso (2010) argues that primary care in rural Nigeria has declined due to contraction of government funding relative to the deteriorating health of rural citizens. This creates a higher reliance on international philanthropy such as The Bill and Melinda Gates Foundation where there is no focus on epilepsy. However, in dealing with these conditions and the associated poverty, the prevalence of epilepsy, especially where it is related to outcomes of poverty such as cysticercosis and head injuries, may in turn be lowered.

The Role of Affordable, Quality and Consistently Accessible Medicines in Health Care The supply of medicines is an integral part of addressing treatment gaps in all conditions that affect the poor. Policies to provide equitable health financing and to strengthen the role of primary health care in developing countries need to focus on supplying medicines to those who cannot purchase them. In epilepsy as with other chronic and life threatening diseases such as tuberculosis, malaria and HIV/AIDS for medicines to create improved health outcomes in individual lives the supply of medicines needs to be affordable, of a safe consistent quality and readily available. Ready availability in developing countries is a far different notion to that employed in developed countries. Here availability means at a walkable distance, provided at the same location and at the same time as the clinical appointment or provided by a mobile clinic or pharmacy. It also should encompass the point that a patient cannot lose work or income in

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order to obtain the medicines, as that may mean the difference between having work and income and providing food and shelter or losing them for the whole family. However, despite the essential role played by modern medicines in health care, in the discussions cited here of the need for health financing reform and the restructuring of primary health care to benefit the poorer sections of developing countries the role of an affordable supply of medicines receives only passing attention. The extent of the problem has been captured by Oxfam International (Chong, 2003) which estimates that one third of the world‘s population does not have access to affordable medicines. The treatment gap that has existed in developing countries particularly in relation to reliable and adequate supply of medicines for all health conditions long before the AIDS epidemic has become accentuated. The sheer size of the epidemic and its consequences for the socio-economic development of developing countries where some 34 million people world wide are infected with HIV has highlighted moral questions about access to affordable medicines (Schuklenk and Ashcroft 2001). Schuklenk and Ashcroft (2001) explore the factors that affect the availability of medicines in any country, pointing out that the principal requirements are a manufacturer of medicines and buyers prepared to buy them. In the case of medicines, many pharmaceutical companies have virtual monopolies leaving buyers (often national governments) with little negotiating power. In the HIV/AIDS area many international pharmaceutical companies have donated medicines on a limited basis, rather than provide them at affordable rates. However in some instances pharmaceutical companies have provided their antiretrovirals at reduced rates, but this is still too much for many of the world‘s poor. Schuklenk and Ashcroft (2001) give the example of antiretrovirals being made available in Senegal at reduced prices of between $850 and $1950 per person per year when the average annual income is $510.00. Additionally, in developing countries where there are no national government pharmaceuticals schemes to control the price of medicines, such as in Australia, the price of medicines can actually be higher than in developed countries. Traditionally, essential medicines have been provided to developing countries a number of ways: through donations either by pharmaceutical companies or philanthropy; by reducing prices to individual countries and through public-private partnerships(Moller et al 1998). All of these methods, though laudable and often motivated by an ethical approach to helping poorer nations (see for example Tan and Avanzini 2009) have been shown to be of limited benefit. For example, philanthropic donations may be linked to projects so the supply ceases at the end of the project, while donations from pharmaceutical companies may also be time limited, such as Boehringer-Ingelheim‘s free provision of Nevirapine in South Africa for a limited time. ‗Corporate citizenship‘ programs offered by international pharmaceutical companies such as Novartis, require a physician to apply on behalf of their patients for access to free drugs. This strategy is hardly likely to address the gaps in treatments in rural and remote areas of developing countries where there are no physicians or no knowledge of such schemes and the numbers requiring such medications are too large to manage in this manner (Waako et al 2009). With these principles in mind we return to the issues of the supply of AEDs in developing countries. Phenobarbital, phenytoin, carbamazepine and valproic acid all appear on the WHO Model List of Essential Medicines 2009 (WHO 2009b). But this does not necessarily mean they are readily available. In Laos, phenobarbital is only available in a small number of pharmacies and hard to access outside of the capital Vientiane (Barennes et al 2008). While most of the AEDs available are generics and of good quality (Odermatt et al 2007), the cost is

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an estimated $US 25.00 per year for treatment with phenobarbital which is a challenge for those who live below the poverty line. Schuklenk and Ashcroft (2001) argue that compulsory licensing which permits the generic manufacture of patented medicines in a national emergency is the most beneficial and morally responsible approach in the case of HIV/AIDS. They emphasise that this should be accompanied by the development of sustainable health infrastructures and work to prevent infection, such as the eradication of poverty. However, generic manufacture also has its problems, not the least of which is the constant threat to generic manufacturers by international pharmaceutical companies either through lawsuits (Ecks 2008), underselling or preferential pricing (Schmidt 2001) and challenging imports of Indian generics into other countries. ‗Corporate citizenship‘ by international pharmaceutical companies where drugs are provided free to poorer individuals is often only done on condition that the country does not allow generics of the same drug. An example of these ‗guerrilla warfare‘ tactics practiced against generics manufacturers was given by Schmidt in 2001: ‗…Cipla tried to sell a generic version of the AIDS drug Combivir to health officials in Ghana. India has no patent protection for Combivir, a GlaxoSmithKline product, and produces a generic version for about one-tenth of the price. GlaxoSmithKline negotiates patents in some African countries through a regional organization that it believes extends to Ghana. When the company discovered that the sale was taking place, it warned Cipla of a possible patent infringement, and the transaction was halted. (When asked about the incident, a GlaxoSmithKline spokesperson insisted that the company did not threaten Cipla and claimed that the drugs are currently warehoused in Ghana because Combivir has not been approved by the country‘s national health agency.)‘

As a solution to the treatment gap in developing countries generic manufacture has a lot to offer. Generic manufacture of triple antiretroviral therapy can be $US350.00 per year while its patented version in the United States will be $US15,000.00. In Mali, a project evaluated the cost-effectiveness of generic phenobarbital in a rural population where the majority of people with epilepsy had had no chemical treatment for their condition (Nikama et al 2002). This study found that people needed an average of 1.1 tablets per patient per day or 401.5 tablets per year. A box containing 1000 tablets cost $US2 .5 per patient per year (Nikama et al 2002). Setting aside the very real problems of generic substitution that exist for people who already have access to AEDs, generics are an option to people who otherwise rely on international pharmaceutical companies‘ generosity or go without. However, access to generics does not mean that those who most need access to AEDs, that is the rural poor of developing countries, will necessarily benefit because there are still out of pocket costs and difficulties in obtaining those medicines either because of distance from clinics and the need to forego work to travel. Even the cheapest generics may mean the difference between a family subsisting or not.

Conclusion Providing affordable AEDs to people with epilepsy in developing countries has been shown to be an effective means of treating epilepsy. Where it has been undertaken, even in short-term projects the benefits to individuals are evident. Improved seizure control leads to

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better social acceptance and an ability to participate in work and education. Whole families may benefit. However ‗affordable‘ must be understood as being more than ‗cost-effective‘ for the poor of developing countries. ‗Affordable‘ in these cases means that individuals and families can obtain AEDs at a price that does not further impoverish them. In some instances this means the cost should be nothing to the individual or his/her family, with the Government recognising that this is cost-effective because the family continues to maintain itself and the individual can work and contribute to the community. The treatment gap in epilepsy is not an isolated gap; gaps in treatment for life-threatening conditions throughout the developing world continue. This is despite the many projects undertaken and the billions of dollars in aid funding provided by developed nations, philanthropy and individual efforts. Access to health care, including affordable medicines remains out of reach of most of the world‘s poor. To meet these treatment gaps requires far more than money. Overall, the first requirement is the political will to fix the problems. Many developing countries have continued with health systems that are mixes of Western health systems and their traditional systems, with the better-off, city-based citizens being able to access Western health services and poorer rural people receiving no or few services. Health financing in developing countries has maintained user fees and out of pocket payments as a central feature of health systems and this remains a cost to the poor, where the choice becomes treatment or a family starving. Reform of a health system requires a political act without which treatment gaps will continue. A substantial part of health reform in developing countries relates to developing an effective primary care system. Health finances need to be directed away from tertiary services in metropolitan areas towards providing primary care in communities where poorer people live and work. Once again this may require a level of political will since tertiary services appear the more glamorous to overseas funders and philanthropists. Part of this political will may mean a Government drops its reliance on overseas aid to concentrate on creating its own geographically and culturally relevant health infrastructure, which includes trained health workers prepared to work in remote areas, services to care for maternal and child health as well as the major public health issues, such as sanitation and clean water supplies. Where care of people with epilepsy is concerned, there are many competing priorities in a primary care system. Once again to have epilepsy included as a primary health priority requires that those who care about epilepsy act at the political rather than the clinical level. Affordable medicines appear to receive little attention in developing countries, only becoming a priority with the AIDS epidemic. This epidemic has shown that affordable medicines in all conditions are a problem. While international pharmaceutical companies dominate markets, poor access to lower priced generic medicines, including AEDs will continue in developing countries. Accessing affordable medicines however, requires more than just a price war, it requires the political will to undertake health reform so that affordable medicines becomes part of a health system where national governments undertake to provide their communities with cost-effective treatments from the public purse. ‗In a well-organised society there should be universal access to high quality medical care. The whole principle of the UK National Health Service is universal provision and that seems a principle worth exporting. M Marmot Clinical Medicine 2006 People with epilepsy in developing countries will only be able to take advantage of cheap, effective AEDs where there is effective reform of the health system to finance universal access to primary care and consequently universal access to affordable medicines.

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References Awofeso, N. (2010). Improving health workforce recruitment and retention in rural and remote regions of Nigeria. Rural and Remote Health 10,1319. http://www.rrh.org.au Barennes, H., Tran, D., Latthaphasavang, V., Preux, P., and Odermatt, P. (2008). Epilepsy in Lao PDR: From research to treatment intervention. Neurology Asia 13, 27-31. Baskind, R., and Birbeck, G. (2005). Epilepsy in Zambia: a study of traditional healers, Epilepsia, 46, (7), 1121-6. Berhanu, S., Alemu, S., Prevett, M., and Parry, E. (2009). Primary care treatment of epilepsy in rural Ethiopia: Causes of default from follow-up, Seizure, 18, (2), 100-103. Chisholm, D. (2005). Cost-effectiveness of First-line Antiepileptic Drug Treatments in the Developing World: A Population-level Analysis Epilepsia, 46(5), 751–759. Chong, C. (2003). Affordable drugs for developing countries. Hong Kong Med Journal, 9 (2), 148-149. Cruz, M. (2005). Epilepsy: the treatment gap in developing countries. Presentation made at Forum 9, Mumbai, India September 2005. www.globalforumhealth.org/filesupld/forum9/CD%20Forum%209/papers/Cruz%20M.pdfAccessed February 2010. Duval Smith, A. (2009). Experts want African aids funds channelled away from HIV. The Observer, Sunday 25 October 2009. Ecks, S. (2008). Global pharmaceutical markets and corporate citizenship: The case of Novartis' anti-cancer drug Glivec. BioSocieties 3:165-181. Gouri-Devi, M., Satishchandra, P., and Gururaj, G. (2003). Epilepsy control program in India: a district model, Epilepsia 44 (supplement 1), 58-62. Hotez. P., Fenwick, A., Savioli, L., and Molyneux, D. (2009). Rescuing the bottom billion through control of neglected tropical diseases, The Lancet, 373, (9674), 1570–1575. Khun, S., and Manderson, L. (2008). Poverty, user fees and ability to pay for health care for children with suspected dengue in rural Cambodia International Journal for Equity in Health 2008, 7:10 doi:10.1186/1475-9276-7-10 Accessed January 2010. Jamison, D. (2006). Investing in Health in Disease Control Priorities in Developing Countries (2nd Edition), http://www.dcp2.org/pubs/DCP pp3-34 accessed February 2010. Jilani, A., Azhar, G., Jilani, N., and Siddiqui, A. (2009). Private providers of Healthcare in India: A policy analysis. The Internet Journal of Third World Medicine, 8, (1). http://www.ispub.com/journal/the_internet_journal_of_third_world_medicine/volume_8_ number_1_17/article/private-providers-of-healthcare-in-india-a-policy-analysis.html. Accessed February 2010. Laxminarayan, R., Chow, J., and Shahid-Salles, S. (2006). Intervention Cost-Effectiveness: Overview of Main Messages in Disease Control Priorities in Developing Countries 2 nd Edition http://files.dcp2.org/pdf/DCP/DCP02.pdf Accessed February 2010. Marmot, M. (2006). Health in an unequal world, Clinical Medicine, 6, 559–72 Meinardi, H., Scott, R., Reis, R., and Sander, J. (2001). The treatment gap in epilepsy: the current situation and ways forward, Epilepsia, 42 (1), 142-153 Mbuba, C., Ngugi, A., Newton, R., andCarter, J. (2008). The epilepsy treatment gap in developing countries: A systematic review of the magnitude, causes, and intervention strategies. Epilepsia, 49 (9), 1491-1503.

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Mbuba, C., and Newton, C., (2009). Packages of care for epilepsy in low- and middle-income countries, PLOS Medicine. Published On-line 2009 October 13.doi:10.1371/journal.pubmed.1000162 accessed February 2010 Nimaga, K., Desplats, D., Doumbo, O., and Farrier, G. (2002). Treatment with Phenobarbital and monitoring of epileptic patients in rural Mali. Bulletin of the World Health Organization, 80, (7), doi: 10.1590/S0042-96862002000700004 Nizamie, S., Akthar, S., Banerjee, I., andGoyal, N. (2009). Health care delivery model in epilepsy to reduce treatment gap: World Health Organization study from a rural population in India, Epilepsy Research 84, 146-152. Odermatt, P., Lya, S., Simmalaa, C., Angertha, T., Phongsamoutha, V., Macc, T., Ratsimbazafyc, V., Gaulierd, J., Strobela, M., and Preux, P. (2007). Availability and Costs of Antiepileptic Drugs and Quality of Phenobarbital in Vientiane Municipality, Lao PDR Neuroepidemiology, 28, 169-174 DOI: 10.1159/000103270. Accessed February 2010 Pardeshi, G. (2009). Primary Healthcare in India: An ideal approach. Asian Hospital and Healthcare Management, 20, http://www.asianhhm.com/healthcare_management/ primary-healthcare-india.htm Accessed February 2010. Radhakrishnan, N. (2009). Challenges in the management of epilepsy in resource-poor countries. Nature Reviews Neurology, 5, 323-330. Schmidt, C. (2001). Drugs as intellectual property: the enforcement of patent laws in developing countries limits the availability of generic alternatives, Modern Drug Discovery, 4 (6), 25-26. Scheiber, G., Fleisher, L., and Gottret, P. (2006). Getting real on health financing. Finance and Development, 43 (4), http://www.imf.org/external/pubs/ft/fandd/2006/12/scheiber. htm. Accessed January 2010. Schuklenk, U., and Ashcroft, R. (2001). Affordable access to essential medication in developing countries: conflicts between ethical and economic imperatives. Journal of Medicine and Philosophy 2001, 27 (2), 179-195. Somkotra, T., and Lagrada, L. (2008). Payments for health care and its effect on catastrophe and impoverishment: experience from the transition to Universal Coverage in Thailand, Social Science and Medicine, 67, 2027-2035. Summers, R., Moller, H., Meyer, D., and Botha, R. (1998). ―Contracting Out‖ drug procurement and distribution: experience with a primary distributor system in South Africa, Essential Drugs Monitor No. 025-026, http://apps.who.int/medicinedocs/ en/d/Jwhozip10e/ Accessed January 2010 Tan. C., and Avenzini, G. (2009). Ethical issues related to epilepsy care in the developing world, Epilepsia, 50 (5), 975-7. Waako, P., Odoi-adome, R., Obua, C., Owino, E., Tumwikirize, W., and Aupont, O. (2009). Existing capacity to manage pharmaceuticals and related commodities in East Africa: an assessment with specific reference to antiretroviral therapy Human Resources for Health, 7,(21) doi:10.1186/1478-4491-7-21. Accessed February 2010. Walker, C. (2009). Who gets treatment for epilepsy? The political economy of the treatment gap. In Pinikahana J and Walker C (Eds) Social Epileptology: Understanding social aspects of epilepsy. Nova Science Publishers, New York

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World Health Organization. (1997). Global Campaign Against Epilepsy; Out of the Shadows. Geneva. WHO. World Health Organization. (2004). Epilepsy in the Western Pacific Region: Call to action, Regional Office for the Western Pacific, Philippines. WHO. World Health Organization. (2009a). Promoting health and equity: evidence, policy and action. Cases from the Western Pacific Region. Regional Office for the Western Pacific, Philippines. WHO. World Health Organization. (2009b). Model List of Essential Medicines 2009. WHO. http://www.who.int/selection_medicines/committees/expert/17/sixteenth_adult_list_en.pd f . Accessed February 2010.

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter VI

Health Literacy and the Outcomes of Care among Individuals with Epilepsy Ramon Edmundo D. Bautista 1and Maria Adela B. Bautista 2 1. Comprehensive Epilepsy Program, University of Florida Health Sciences Center/Jacksonville, Jacksonville, Florida, USA 2. College of Public Health, University of North Florida, Jacksonville, Florida, USA

Abstract Epilepsy is a common neurologic condition that affects up to 1% of the population. With current treatment modalities, it is estimated that up to 90% of individuals with epilepsy are significantly improved. Health literacy is defined as the ―degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions‖. The importance of adequate health literacy as a means of effective disease management cannot be over-emphasized. For both patients and their caregivers, good health literacy results in the optimization of medical care and also allows for their maximum integration into society. Across various disease conditions, it has been shown that limited health literacy is associated with poorer clinical outcomes, increased mortality, and the inefficient utilization of healthcare resources. Unfortunately, up to 25% of Americans have low health literacy, with difficulty understanding many commonly-used medical terms and are unable to consistently follow physician instructions. Given the complexity of epilepsy care, it would be reasonable to assume that the association between health literacy and epilepsy  Correspondence: Dr Ramon Edmundo D. Bautista, Associate Professor of Neurology, University of Florida Health Sciences Center/Jacksonville, Tele: (904) 244-9190, Fax:(904) 244-9493. E-mail: ramon.bautista@ jax.ufl.edu.

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Ramon Edmundo D. Bautista and Maria Adela B. Bautista care has been well-established and that various programs already exist to improve the health literacy of individuals with epilepsy and their caregivers. However, while some studies have shown an association between decreased health literacy and poor quality-oflife, on the whole, the current knowledge-base on health literacy and epilepsy is sparse and established paradigms that aim to improve the health literacy of those with epilepsy and their caregivers are virtually nonexistent. Major hurdles exist that limit the health literacy of those with epilepsy, including relatively low education and income levels. Strategies to improve health literacy in this population will need to include approaches adapted from other disease states as well as novel ones that take into account the unique situation of those afflicted with this condition. Addressing the issues of poor health literacy will undoubtedly optimize epilepsy care and accelerate the societal integration of these individuals.

Introduction Epilepsy is a common neurologic condition affecting up to 1% of the population (Hauser, 1978). Numerous therapies are available for the control of epileptic seizures. Antiepileptic drugs (AEDs) continue to be the mainstay of treatment. Beginning with phenobarbital, which was first synthesized in 1857 and made commercially available in 1904 (Shorvon, 2009a), there are now over 2 dozen antiepileptic medications available worldwide for the treatment of this condition (Shorvon, 2009a; Shorvon, 2009b). In a study by Brodie and Kwan (2002), it is estimated that 47% of patients respond well to their first AED while an additional 13% become seizure-free on their second AED and another 1% with the third AED. Interestingly, despite the increased number of AEDs that have become available over the past 20 years, the efficacy of AEDs, in both mono- and combination therapy, has not significantly increased. Also, although certain AEDs are preferred for particular types of seizure disorders, such as idiopathic generalized epilepsy, there is no particular combination of AEDs that have consistently increased efficacy. Individuals who fail to adequately respond despite a trial of two or more AEDs are defined as having refractory epilepsy (Beleza, 2009). Some of these patients undergo epilepsy surgery evaluation with the intent of identifying a seizure focus that is resectable without causing significant neurologic deficits (McKhann et al., 2002). Another treatment option for epilepsy patients include the vagus nerve stimulator. This is considered for individuals who are not deemed to be suitable surgical candidates or for whom antiepileptic medications cause intolerable side effects (Wheless and Baumgartner, 2004). The ketogenic diet is also used to control seizures in some patients, usually within the pediatric age group, although the use of the diet rarely extends into the adult years (Huffman and Kossoff, 2006). Up-and-coming therapies, now in various stages of development, include deep brain stimulation, again to be used primarily in individuals with refractory epilepsy (Anderson et al., 2009). The number of treatment options for epilepsy, as well as the potential number of AED combinations that can be individualized to a particular patient, only highlights the complex circumstance currently encountered by patients and caregivers who deal with this condition. Although the treatment gap encountered among epilepsy patients is usually attributed to factors such as poverty (Radhakrishnan, 2009), it is important to determine if other variables, such as health literacy, can contribute to this.

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In this chapter, we examine the role health literacy plays in the management of individuals with epilepsy. We look at the commonly accepted measures of health literacy and factors that are generally associated with poor health literacy. We then examine those factors that limit the health literacy of epilepsy patients and the consequences of poor health literacy in this population. Finally, we discuss the various approaches that can be taken to address the issue of poor health literacy among epilepsy patients.

What is Health Literacy? Health literacy is defined as " the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions" (Ratzan and Parker, 2000). Zarcadoolas and colleagues (2005) describe four central domains necessary for individuals and society to achieve an acceptable level of health literacy. These include:    

Fundamental literacy – the skills necessary to read, speak, write, and use numerals. Science literacy – a basic understanding of science and technology. Civic literacy – being aware of and involved in public health issues. Cultural literacy – interpreting and using health information in light of society‘s beliefs, customs, and world-views.

Assessing Health Literacy Because a substantial amount of health literature is written, and it is assumed that poor health literacy is an effect of poor comprehension of these materials, widely-used tests of health literacy focus on the ability to read and comprehend health-related materials. The Rapid Estimate of Adult Literacy in Medicine (REALM) was developed in 1991 and is a quick screening tool to assist physicians in identifying patient with limited reading skills. It is a word-recognition and pronunciation test containing 66 medical terms arranged according to higher levels of complexity. Patients pronounce as many words as they can and are scored using standard dictionary pronunciations. Scores range from 0 (no words pronounced correctly) to 66 (all words pronounced correctly) and are ranked into 4 categories of grade-equivalent reading levels. REALM scores correlate highly with standardized reading tests such as the Peabody Individual Achievement Test-Revised and the Slosson Oral Reading Test (Davis et al., 1991). The Test of Functional Health Literacy in Adults (TOFHLA) consists of a 50-item reading comprehension (taken from 3 prose passages) and 17-item numerical ability test designed to measure functional health literacy using real-life health care situations, such as the ability to read instructions on a prescription bottle. Reading comprehension responses are chosen from a multiple choice list of possible answers. TOFHLA scores correlate well with the Wide Range Achievement Test-Revised (WRAT-R) and the REALM and measures the ability of patients to read health-related materials and perform basic reading tasks (Parker et

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al., 1995). A shortened version of the TOFHLA (S-TOFHLA) consists of 2 Prose passages and 4 Numeracy items and shows a 0.8 correlation with the REALM (Baker et al., 1999). Chew and colleagues (2004) analyzed 16 health literacy questions among Veterans Administration (VA) patients and determined that three of them (―How often do you have someone help you read hospital materials?‖, ―How confident are you filling out medical forms by yourself?‖, and ‖How often do you have problems learning about your medical condition because of difficulty understanding written information?‖) individually correlate with detection of inadequate health literacy using overall STOHFLA scores (with an area under the curve of 0.87, 0.80 and 0.76 for each of these questions respectively). A major criticism against current health literacy assessment tools is its overemphasis on the evaluation of written information. It has been pointed out that the majority of the world‘s population still lives in oral and visual cultures and learn through listening and watching, and not so much on reading and writing skills (Kickbusch, 2001). Current measures of health literacy do not measure oral communication skills nor do they acknowledge the cultural differences in the approaches to healthcare.

Health Literacy in the United States In the United States the first ever national survey for health literacy was performed in 2003 as a health literacy component (HLC) to the 2003 National Assessment of Adult Literacy (NAAL). Results from this survey were used to establish a baseline and develop objectives as part of the Healthy People 2010 initiative (Pelletier LR., 2000). Within the NAAL survey, 28 items comprised the HLC. These items assessed 3 types of health information and services encountered by the general population. 

 

Clinical tasks are activities that deal with the interaction between the health professional and patient. These include tasks that have to do with the diagnosis and treatment of the medical condition. Prevention tasks are those that have to do with disease prevention, health maintenance and improvement, as well as adapting healthy behaviors. Navigation of the healthcare system tasks are those that focus on the understanding of the healthcare system as well as an awareness of a patient‘s rights and responsibilities. These tasks also assess how well an individual is aware of common terminologies and concepts needed to maneuver through the system (U.S. Department of Health and Human Services, 2003).

Similar to the general literacy component of the NAAL survey, the ability to perform the HLC tasks were measured across the literary scales of prose, document, and quantitative literacy. 

Prose literacy – the ability to comprehend and complete prose tasks, (continuous texts) such as understanding brochures, and instructional materials.

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

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Document literacy – the ability to comprehend and complete document tasks, (materials containing non-continuous text) such as understanding prescrtiption directions, transportation schedules, and food labels, Quantitative literacy – the ability to complete and comprehend quantitative tasks, (numeracy aptitude) such as the ability to balance a checkbook and determine the correct dollar amount (U.S. Department of Education, n. d.).

Health literacy levels were measured across the following scales:    

Below basic – possessing only the most rudimentary literacy abilities Basic – possessing those abilities needed to do simple and daily literacy tasks Intermediate – possessing abilities needed to do moderately challenging literacy tasks Proficient – possessing abilities needed to do more complicated literacy tasks (Kutner, et al., 2006).

Factors Associated with Health Literacy Nineteen thousand adults completed the survey. Of these 53% had intermediate health literacy. Fourteen percent had below basic health literacy while 12 percent had proficient health literacy. Factors associated with health literacy included:  







  

Gender – women had better average health literacy scores than males. Race and ethnicity - Caucasians and Asian/Pacific Islanders had better health literacy scores compared to African Americans, Hispanics, American Indian/Alaska Native, and Multiracial adults. Hispanics had lower average health literacy scores than other racial/ethnic groups. Language – those who spoke English only before starting school had better average health literacy scores compared to those who spoke another language. Those speaking Spanish only before starting school had the lowest average health literacy. Age – Adults 65 years and older had worse average health literacy scores compared to other age groups. Adults age 25 to 39 years had the highest average health literacy scores. Educational attainment – Beginning with those who finished high school or attained its equivalent (GED), average high literacy scores increased with higher levels of educational attainment. Those who did not complete high school and were not currently enrolled in school had the lowest scores. Income – Those living below the poverty level had lower average health literacy scores compared to those living above the poverty levels. Self-assessment of overall health – Adults with higher self-reported levels of overall health had higher average health literacy scores. Health Insurance – Adults who received employer-provided insurance had higher average health literacy scores compared to those who received their insurance through other sources. Adults who received insurance through government programs

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

(Medicare and Medicaid) and those who had no health insurance had lower average health literacy scores. Sources of health information –Individuals with higher levels of health literacy relied more on print media, the internet, and personal contacts for their source of health information (Kutner, et al., 2006).

Factors Affecting Health Literacy in the Epilepsy Population Very little is known about the effect of poor health literacy among individuals with epilepsy. However, based on the results of the 2003 NAAL survey, it is apparent that there are certain characteristics seen in the epilepsy population that may adversely influence their health literacy.

1. Education Due to their medical condition, a significant proportion of the epilepsy population is unable to complete even their basic education. This may affect their level of health literacy. Some studies indicate that in certain populations, less than 50% of epilepsy patients actually complete a high school education (Herodes et al., 2001; Bautista et al., 2007). The age of seizure onset influences the level of education of individuals with epilepsy. In a study by Koponen and colleagues (2007) that compared the social functioning of 22-25 year old Finnish epilepsy patients to healthy age- and gender- matched controls, only 39% of individuals with seizure onset before 7 years of age had a college level education compared to 52% of those with later-onset seizures. In a study of individuals with epilepsy living in the Netherlands, those who were diagnosed to have seizures on or before 18 years of age generally achieved a lower level of education. There was no relation between schooling achievement and the onset of epilepsy after 18 years of age (Shackleton et al,, 2003). However, other studies did not show this association. (Varma et al., 2007).

2. Intelligence Another factor that may adversely influence health literacy is the decreased intellectual functioning that is seen in the epilepsy population and has been cited in several studies. Sunmonu and colleagues (2008) studied 41 individuals with epilepsy and an equivalent number of age-, sex-, and education-matched health controls. Each subject was asked to complete the Wechsler Adult Intelligence Scale (WAIS). Their study found that subjects with epilepsy consistently performed poorer on the verbal IQ, performance IQ, and full-scale IQ portions of the WAIS compared to controls. Earlier, Nevens and colleagues (1999) followed 11 children with newly diagnosed epilepsy over several years and compared their performance on standardized tests of intellectual functioning to a control group. Their study revealed significantly less gain on full-scale IQ performance compared to children without

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epilepsy. Another study (Jokeit and Ebner, 1999) compared the WAIS performance of 209 individuals with temporal lobe epilepsy of varying disease duration. They found that individuals with a seizure history of more than 30 years duration had significant lower full scale IQ scores compared to those with between 15-30 years duration. There are several reasons why individuals with epilepsy may experience difficulties with cognitive function. This may be caused by the disease process itself. For example, individuals with epilepsy of temporal lobe origin may experience material-specific memory problems. Those whose seizures originate in the left temporal lobe generally experience deficits of verbal memory (Novelly et al., 1984; Hermann et al., 1997) while right temporal lobe epilepsy produces deficits of visual memory (Malek, 1991; Hermann, 1997). In particular, poor performance on the Selective Reminding Test seen in individuals with left hippocampal sclerosis corresponds to cell loss in the CA3 and hilar layer (Sass et al., 1992). On the other hand, individuals with frontal lobe epilepsy may suffer from cognitive dysfunctions that are somewhat different from the pattern seen in those with temporal lobe epilepsy. Upton and Thompson (1996) studied 74 patients with frontal lobe epilepsy and compared their performance on a battery of neuropsychological tests to a group of patients with temporal lobe epilepsy. Their findings revealed that those with frontal lobe epilepsy had more difficulties with tasks of executive functioning as well as greater impairments of cost estimation, twenty questions, and Stroop tasks. Greater impairment was seen in patients with left frontal lobe epilepsy. On the other hand, Exner and colleagues (2002), showed that while individuals with frontal lobe epilepsy performed poorly on tests of memory, attention, and intelligence, their performance did not differ significantly from patients with temporal lobe epilepsy. Another factor that may adversely effect the cognitive functioning of epilepsy patients is the use of AEDs. Since their inception, AEDs have been associated with cognitive slowing. This is especially true for older AEDs such as phenobarbital (Shorvon, 2009a) but continues to be seen even with the newer AEDs (Shorvon, 2009b). Patients on higher levels of AEDs appear to have an accelerated rate of forgetting compared to those on lower levels (Jokeit et al., 2005). Recently, it has been determined that in-utero exposure of antiepileptic medications is linked to impaired cognitive functioning in early childhood (Thomas et al., 2007).

3. Socioeconomic Level Although epilepsy afflicts individuals from all income levels, various studies indicate that a larger percentage of the epilepsy population come from the lower socioeconomic classes. This phenomenon appears in several publications performed across various regions and cultures worldwide. Noronha and colleagues (2007) conducted a door-to-door survey of over 54,000 individuals living in three municipalities in Brazil and representing 58% of the total population. Of these, 496 had confirmed epilepsy. Compared to the standardized prevalence of each socioeconomic group, a significantly higher number of individuals from the lower social classes had epilepsy. In the United Kingdom, 190 new cases of epilepsy were identified across 20 general practices in London and southeast England over a 24-month period. Using the Carstairs score

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of social deprivation, the authors determined that social deprivation was significantly associated with a larger number of newer cases of epilepsy (Heaney et al., 2002). Hesdorffer and colleagues (2005) reviewed data from a nationwide surveillance system in Iceland to assess the relation between socioeconomic status (SES) and incident cases of epilepsy from 1995-1999. In their study, SES was determined across a variety of measures that included income, education, and home ownership. Their study showed a positive association between SES and new onset epilepsy among adults. In particular, home ownership appeared to be protective against the development of epilepsy. Elliott and colleagues (2009) performed a telephone survey of 604 patients with epilepsy residing in California. Of these, 41% subsisted at less than 200% Federal level. Although individuals from lower socioeconomic levels had somewhat increased odds ratio of reporting a history of epilepsy (1.7), the difference became insignificant after adjusting for healthcare access and other factors such as housing status and annual income.

4. Cultural Stigma Perhaps more than any other medical condition, societal understanding and acceptance of epilepsy and seizures have been shrouded in myths and misperceptions, often resulting in the stigmatization of individuals with this condition. In many ways, cultural stigma is a reflection of low public health literacy on epilepsy. As recent as 1956, eighteen United States‘ states still had laws authorizing the eugenic sterilization of individuals with epilepsy. In the United Kingdom, laws preventing epilepsy patients from marrying were repealed in 1970. Only in 1980 did the last U.S. state repeal its laws forbidding those with epilepsy from marrying (McLin et al., 1995). Misperceptions regarding the disorder still abound in many parts of the world, with greater misunderstandings often encountered in more rural areas and among the elderly and less educated. In a 1988 survey of individuals living in the Henan province in China, 57% of respondents objected to having their children associate or play with other children who had epilepsy while 87% objected to having their children marry someone with the condition. Only 53% believed that those with epilepsy should be employed. Ten percent did not know what an epileptic attack was and 17% did not know what to recommend if their family and friends had the disorder. More educated respondents appeared to show less prejudice (Lai et al, 1990). Another survey conducted in Northern India revealed that 20% of respondents were ignorant about the manifestations of epilepsy and 57% did not know what to do if they encountered a patient who was having seizures. Forty percent of respondents felt that those with epilepsy should not be sent to school and objected to their children playing with those who had the condition. Two-thirds of respondents objected to their children marrying a person with the condition. More educated individuals showed less prejudice (Gambhir et al, 1995). The degree of social stigma towards individuals with epilepsy in certain regions in the African continent was described in a paper published by Jilek-Aall and colleagues (1997). Interestingly, this paper also reflects the relation between societal progress and the acceptance of individuals with epilepsy. The authors documented the perceptions towards epilepsy of villagers living in the neighboring villages of Mahenge and Ruaha located in Tanzania. Many of the more traditional notions of epilepsy continued to exist in the less developed Ruaha, including the existence of the vengeful epilepsy spirit (kifafa). The notion that epilepsy is

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contagious was still prevalent among the village people resulting in an inordinate amount of social restriction and isolation imposed on those with the condition. In contrast, those residing in more developed Mahenge had progressive and tolerant views of epilepsy resulting in the increased acceptance and societal integration of individuals with this disorder. In more urbanized countries, the prejudice against individuals with epilepsy appears to be decreasing. In an Italian survey conducted in 1983, 52% of respondents had seen someone having a seizure. Only 11% of respondents objected to their children playing with others who had epilepsy and 70% believed that those with epilepsy should be employed in jobs. Only 8% of respondents thought that epilepsy was a form of insanity (Canger and Cornaggia, 1985). Fortunately, the trend towards decreasing prejudice appears to be improving over time. The American Institute of Public Opinion conducted 7 polls from 1949 to 1979. In this time period, those who did not think that epilepsy to be a form of insanity increased from 59% in 1949 to 92% in 1979. When asked whether they would allow their children to play with those who had epilepsy, those without objections increased from 57% in 1949 to 89% in 1979. Respondents who agreed that those with epilepsy should be employed increased from 45% to 79% in this time period. The most favorable opinions were found among respondent who were better educated, better employed, younger, and urbanized (Caveness and Gallup, 1980). A similar trend was reported in a study conducted in the South Moravian region of the Czech Republic. In that study, Novotna and Rektor (2002) conducted a survey of 235 individuals in 1997 to determine their attitudes towards epilepsy. This study was then compared to an earlier survey of 387 individuals that was performed in the same region in 1981 (Rektor et al., 1983). The results of these two studies showed that in 1987, 74% of respondents believed that individuals with epilepsy should be employed in jobs like other people. This was a significant improvement from the 1981 survey wherein only 42% of those surveyed shared this belief. Also, intolerance towards children with epilepsy decreased from 29% to 12%. By 1997, 94% of respondents already had some information about epilepsy compared to 78% in 1981. A third study conducted in Hungary (Mirnics et al., 2001) compared the results of a survey performed on 1,000 individuals in 2000 to a similar one conducted in 1994. In the 1994 survey, 55% of respondents believed that people with epilepsy could not be employed like other people. In contrast, by 2000, only 38% of respondents shared this view.

Consequences of Poor Health Literacy in the Epilepsy Population We conducted a face-to-face interview of 140 adult epilepsy patients who were followed at the Comprehensive Epilepsy Program at the University of Florida Health Sciences Center in Jacksonville, Florida, USA. Aside from demographic data (age, gender, race, marital status, highest educational attainment, and annual household income), we also obtained information regarding seizure frequency. We also performed the Quality of Life in Epilepsy10 Inventory (QOLIE-10) (Cramer et al, 1996) and the Liverpool Seizure Severity Scale (Scott-Lennox, 2001). We performed the screening tests for health literacy earlier presented (Chew et al., 2004). We used the individual health literacy questions as target variables, and on univariate analysis, we determined which predictor variables were significantly associated.

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We then performed multiple linear regression on the significant variables to determine those that retained their importance. The results of our study indicated that poorer QOLIE-10 scores and lower annual household income were independently associated with 2 of the 3 health literacy screening questions (―How often do you have someone help you read hospital materials?‖, and ―How confident are you filling out medical forms by yourself?‖). Only QOLIE-10 scores were independently associated with the third health literacy screening question (―How often do you have problems learning about your medical condition because of difficulty understanding written information?‖). The association between QOLIE-10 scores and health literacy scores were generally seen across all subscales of the QOLIE-10. There appears to be an association between worsening seizure frequency and poor scores on the third health literacy question on univariate analysis, but this was not seen on multivariate analysis. Neither was seizure frequency associated with the other two health literacy scores. Although the lack of association between seizure frequency and health literacy screening is intriguing, it suggests that seizure severity may be influenced more by other conditions such as disease pathophysiology (Bautista et al., 2009). Our work is the first to establish a direct relation between decrease health literacy and poor quality of life in the epilepsy population and provides an impetus for developing future researches to improve health literacy in this group of patients.

Strategies to Overcome Low Health Literacy in the Epilepsy Population The review of the literature focusing on improving health literature in the epilepsy population is sparse and many of the strategies to be implemented in this population will need to be based on experiences in other disease states. The following represents some of the approaches that may be employed to improve the health literacy of this population.

1. Improve Overall Public Health Literacy In a broad sense, improving health literacy ought to go beyond individual patient education. One of the main approaches to addressing poor health literacy should be to continue to further societal education of this disorder. In many respects, the ability of epilepsy patients to accept their condition and deal with it in an effective manner is a reflection of society‘s ongoing acceptance of this condition. A lack of societal acceptance typically results in stigma, which is defined as ―a loss of societal standing due to the possession of an attribute, usually a medical condition, to the extent beyond that imposed by the limitations of the disorder‖ (Goffman, 1963). As recently as a half century ago, societal stigma towards individuals with epilepsy was evident through the existence of discriminatory laws (McLin et al., 1995). These laws have thankfully been repealed, and many publications attest to the fact that individuals with epilepsy are more accepted in various societies and cultures around the world (Caveness and Gallup, 1980; Novotna and Rektor, 2002; Mirnics et al., 2001). However, in other countries,

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frank discrimination still exists and much still needs to be done (Lai et al., 1990; Gambhir et al., 1995; Jilek-Aall et al., 1997). While ―enacted‖ stigma (the actual experience of discrimination) may have decreased, many individuals with epilepsy still experience ―felt‖ stigma (when they are ashamed of their condition and are fearful of encountering actual stigma) and this still influences patient behavior such as the non-disclosure of their condition in social gatherings and in the workplace (Scrambler and Hopkins, 1980). A study conducted by Kim and colleagues (2003) illustrates the effects of a public education campaign against epilepsy in a group of fishing villagers in South Korea. The authors conducted a door-to-door survey obtaining information on villagers‘ attitudes and knowledge of the disease. They then re-surveyed the subjects after conducting annual lectures at the township office over a 2-year period. The results of the study showed that many false beliefs such as believing that epilepsy was a form of ―divine punishment‖, a mental illness, or due to malnutrition or a blood transfusion were significantly reduced. Also, post-campaign, there was a significant decrease in the belief that epilepsy was treatable with acupuncture, herbal medications, or folk medicine. The belief that individuals with epilepsy should be isolated, not have children, and that children should not associate with those with the condition also decreased. The results of the study indicate that aggressive educational campaigns can be useful tools to change public beliefs and attitudes towards epilepsy.

2. Target Widely-Used Sources of Health Information for Knowledge Dissemination Another means to improve the health literacy of the general public and epilepsy persons is to target commonly-used sources of general information. This should potentially allow a greater dissemination of information regarding epilepsy and seizure disorders, and help to dispel many still-held misconceptions. According to the National Adult Literacy Survey (NALS), individuals of various literacy levels commonly obtained health information from family and friends, newspapers and magazines, radio and television (Kirsch, 1993). A Gallup poll in 2002 (Gallup organization, 2002), showed that the lay public still access the majority of their health information from physicians (70%), although a significant number also obtain health information from television (64%), books (56%), newspapers (52%), magazines (51%), nurses (49%), and the internet (37%). Several variables affect the choice of medium. According to Dutta-Bergman (2004), health-conscious, health-information oriented individuals tend to use active communication channels such as interpersonal communication, print media, and internet communication, while passive communication channels such as television and radio serve as primary health information sources for individuals who are not health-oriented. When employing the mass media as a means of patients and community education, one has to be aware of its tendency to at times misrepresent health information. For example, Bomlitz and Brezis (2008) comment that there tends to be a general under-representation in reporting the risks of smoking and obesity, and the relative over-reporting of SARS and bioterrorism, though the former conditions have significant higher mortality rates and are larger public health concerns.

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Kuriya and colleagues (2008) also examined the quality of press releases issued by the leading pharmaceutical companies in 2005 that were based on original researches. A total of 235 press releases were examined. Although adverse effects were commonly cited (76%), 21% of press releases were not explicit about the source of original data and study limitations were rarely noted (6%). Twenty-nine percent of press releases also did not quantify study results.

3. Adopt Culturally Sensitive Approaches to Improving Health Literacy In order for epilepsy health literacy programs to be effective, they should be understood and addressed in the context of a society‘s culture and language. According to NielsenBohlman and colleagues (2004), different cultural groups formulate ―unique cultural languages that must be considered before formulating a culturally competent approach for implementing programs to promote health literacy‖. This goes far beyond merely being able to speak a given language and extends to being sensitive to the nuances seen in different cultures. An example of this nuance can be seen in the study of Des Courtis and colleagues (2008). The authors compared the treatment approaches of mental health professionals in Switzerland and Brazil using a case vignette of a patient with mental depression. While both groups of health care professionals showed equal scores for social acceptance, those from Brazil showed a more positive attitude towards community therapy while Swiss professionals favored psychopharmacology. Cultural nuances go beyond treatment preferences and may extend to attitudes towards the disease itself. Wu and Bancroft (2006) conducted an unstructured interview on FilipinoAmerican women to determine their attitudes towards breast health. The results of their study indicated a high degree of avoidance in discussing the topic due to fear and also highlighted the importance of family in motivating these women to seek breast screening. Patients also showed a preference for dealing with physicians who were from their own culture. Tanjasiri and colleagues (2007) developed culturally sensitive materials for breast cancer screening among Hmong women residing in Fresno and San Diego, California. The materials were created not just for women but also for their husbands in order to encourage them to support their spouses. Post-workshop surveys showed a significant increase in knowledge as well as positive attitudes towards breast cancer screening. In a follow-up study over a year later, a significantly higher number of women who took part in the educational program still had regular breast examination and underwent a mammography (Kagawa-Singer et al, 2009) compared to the comparison group. These studies indicate the importance of culturally sensitive materials as a means of increasing health literacy and undergoing the intended health care interventions.

4. Improve the Health Literacy of Family Members and Caregivers In many circumstances, the day-to-day management of epilepsy is performed by family members and caregivers. This is especially true for those individuals with psychomotor retardation or those who are debilitated due to their seizures. Thus, it is important to assess

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and deal with limited health literacy not just from an individual patient perspective, but from the caregiver‘s as well. Studies have shown that poor health literacy on the part of the caregivers can have a deleterious effect on patient health. Sanders and colleagues (2009) performed a literature review of articles assessing the prevalence of low health literacy among caregivers and the impact on the care of pediatric patients. The results showed that adult caregivers with low health literacy were up to 4 times more likely to exhibit negative health behaviors that affected patient health and that chronically ill children who had caregivers with low health literacy were more likely to consume more health services. In another study by Yin and colleagues (2008a), caregivers with low health literacy were more likely to use nonstandardized dosing instruments for their pediatric patients and had a general lack of knowledge on weight-based dosing. On the other hand, a study by Hironaka and colleagues (2009) showed that caregivers with lower health literacy adhered more to the once-daily multivitamin with iron regimen given to infants, suggesting that high caregiver health literacy may not be necessary for relatively uncomplicated tasks. It is important to develop health literacy programs that involve not just the patient but the caregivers as well in order to obtain the desired outcomes. Yin and colleagues (2008b) developed a pictogram-based health literacy program for caregivers of infants that was designed to improve adherence to a liquid medication administration regimen. One hundred and twenty four caregivers were enrolled in this intervention and compared to 121 caregivers who were subjected to standard medication counseling. Caregivers were assessed 3-5 days later for knowledge of medications, dosing accuracy, and adherence. Results showed that caregivers who underwent the pictogram intervention had significantly fewer errors in dosing accuracy compared to those who received standard counseling. Furthermore, only 9.3% of interventional caregivers remained non-adherent compared to 38% of those in the control group.

5. Use Case Management and Ancillary Services to Cope with Poor Health Literacy Another way to cope with poor health literacy for patients and caregivers is the use of case management (CM). In this context, CM personnel serve as disease educators and are also used to assure compliance with treatment. An interesting study by Tatum and colleagues (2008) illustrates the utility of CMs as a means to improve treatment adherence. In their study, CMs were assigned to 159 epilepsy patients being seen in South Florida. Although CMs were assigned to patients on the basis of financial need, CMs played multiple roles that included patient education, assisting with physician visits, providing psychological support, and helping with vocational training. Patient surveys were administered at program admission and one year after CM. The results of their survey indicated that 40% of patients had a self-reported increase in seizure control, 83% had an improved quality-of-life and 23% of those previously employed experienced a salary increase. Interestingly, 95% of patients surveyed had an emergency room visit the year prior to being enrolled in the CM program. This decreased dramatically to 5% after CM. The utility of CM has also been established in other disease states (Shelton et al., 2006; Ma et al., 2006).

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6. Improve the Readability of Epilepsy Materials It is commonly believed that the readability levels of most health educational materials extend far beyond the level of most patients and their caregivers, thereby contributing to the poor understanding of their disease condition and their management (Wilson, 2009; Helitzer et al., 2009; El-Ibiary and Youmans, 2007). The Institute of Medicine recommends that health-related information be written at a sixth grade level of lower (Nielsen-Bohlman et al., 2004). Elliott and colleagues (2007) measured the readability levels of the Epilepsy Foundation website www.epilepsyfoundation.org.. Using the Flesch Reading Ease Index (Spadero, 1983), the authors found that only 5.7% of the Epilepsy Foundation English pages had a sixth grade or lower reading level. In a later study, Elliott and Shneker (2009) measured the readability levels of the epilepsy.com website and its 2437 web links. The authors concluded that only 3% of materials were written at or below a sixth grade level and only 15% of contents were at or below an eighth grade level. Some authors believe that it may be too simplistic to associate easy readability with comprehension. In a study by Reid and colleagues (1995), 26 individuals with diabetes were asked to read a 1,000 word excerpt from a widely circulated diabetic pamphlet and were later asked questions to test their comprehension and recall. Fifty-nine percent of patients rated the pamphlet as very easy to read. Despite this, readers recalled only 7% of ideas in the excerpt immediately after reading it. The authors emphasized that aside from readability, other writing characteristics such as repetition and prose organization tailored to the intended audience are important in helping increase reading comprehension.

Conclusion There are many facets included in the care of epilepsy patients. Mainstay therapies such as AEDS and surgery have developed to an extent that epilepsy patients today can look forward to better seizure control. Other variables adversely affecting the outcome of epilepsy care have also been recently brought to the spotlight, not the least of which is health literacy. This chapter shows that improving the health literacy of epilepsy patients and their caregivers makes a difference in the outcome of epilepsy care and deserves more thorough understanding through clinical and theoretical research. Best practices to improve health literacy in this population need to be established and will undoubtedly lead to the improved management of this condition.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter VII

Epilepsy and Employment Malachy Bishop 1 and Chung-Yi Chiu 2

1. Department of Special Education and Rehabilitation Counseling, University of Kentucky, Lexington, Kentucky, USA 2. Department of Rehabilitation Counseling, University of Texas Southwestern Medical Center, Dallas, TX, USA

Abstract Employment is a key element in psychosocial functioning and an important aspect of quality of life. Adults with epilepsy have consistently been found to experience high levels of unemployment and underemployment worldwide. Compared to persons without epilepsy, relatively lower levels of employment have been reported for more than three decades despite the fact that this period has seen improvements in clinical treatment and the enactment of legislation aimed at reducing barriers to equal employment opportunities for persons with epilepsy and other disabilities. Research exploring the array of clinical and psychosocial variables that may contribute to the employment problems and barriers faced by individuals with epilepsy suggests that the disparity is not due to any single factor but is the result of a complex combination of interacting factors. This chapter reviews employment and epilepsy from an international perspective, reviewing the impact of epilepsy on employment from several perspectives. Specifically, in this chapter we review the employment situation for persons with epilepsy internationally, discuss employment barriers, explore the effectiveness of traditional and epilepsy-specific employment programs, and review relevant disability and employment law.

 Correspondence: Professor Malachy Bishop, Department of Special Education and Rehabilitation Counseling, University of Kentucky, Lexington, Kentucky, USA. Telephone: (859) 257-4291, Fax: (859) 257-3835. Email: [email protected].

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Introduction Employment is a critically important aspect of adult psychosocial functioning, providing a variety of intrinsic and extrinsic benefits. Work makes available avenues for social participation, contributes to one‘s social and personal identity, and promotes economic security, and independence. In this chapter we explore the complex relationship between epilepsy and employment. Although the majority of persons living with epilepsy are capable of full participation in the labor market, persons with epilepsy (PWE) have consistently been found to experience high levels of unemployment and underemployment, or employment in a position that requires skill, education, or training below that possessed by the employee, resulting in lower pay than the person is capable of earning. In the past three decades, research interest in the nature, scope, causes, and psychosocial consequences of these employment disparities has increased significantly. This period has also been characterized by dramatic advances in epilepsy treatment, increased political and popular awareness about epilepsy, and the development and enactment of national and international disability-related legislation and regulations addressing civil rights, employment discrimination and barriers to equal employment opportunities for persons with disabilities. Despite these changes, however, compared to persons without epilepsy, PWE continue to experience higher rates of unemployment, underemployment, and employment barriers. Indeed, there is a discouraging similarity between recent descriptions of the apparently intransigent employment situation for PWE (e.g., deBoer, 2005; Fraser, 2005; Jacoby et al., 2005; Smeets et al., 2007) and the following conclusion from the 1978 report by the U.S.based Commission for the Control of Epilepsy and its Consequences: ―Despite the dramatic advances in treatment and rehabilitation making it possible for more than half of those living with epilepsy to lead seizure free lives… and despite Federal legislation that prohibits discrimination in hiring because of handicapping conditions, the number of unemployed persons with epilepsy remains disproportionately high- over twice the national average‖ (p. 85). As epilepsy researchers increasingly focus their attention on employment, there is a growing understanding of both the nature and the potential solutions to the employment hurdles faced by PWE. In this chapter we review the relationship between employment and epilepsy, including an international perspective on the employment status of PWE, the impact of epilepsy on employment and barriers to employment faced by PWE, international employment legislation, and employment programs for PWE.

The Employment Situation for Persons with Epilepsy: International Perspective An accurate assessment of the employment rates for PWE internationally is not currently possible. There is agreement, however, supported by the aggregate research to date, that employment rates for PWE are consistently lower than for the general population (Bishop, 2002, 2004; Collings and Chappell, 1994; Cooper, 1995; Elwes et al., 1991; Fisher, 2000; Fraser et al., 1989; Gloag, 1985; ILAE, 2003; Jacoby et al., 1998; Yagi, 1998). The unemployment rate of PWE has generally been found to be at least two times higher than that

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of the general population. Also, PWE are also more likely to be employed in unskilled and manual jobs (Smeets et al., 2007). The measurement of unemployment and underemployment rates is a complex and controversial process (Clarke et al., 2006; Jacoby et al., 1998). Among the complications in gaining an accurate understanding of employment rates internationally are the lack of a standard definition of employment, employment problems, and employment restrictions across studies (Chaplin, 2005). Also, the majority of studies that have looked at the employment situation for PWE have focused on clinical samples, and thus tend to be based on persons with more severe epilepsy and provide a skewed perspective. For example, in the United States, estimated unemployment rates among community-based samples of people with epilepsy range from 13% to 25% (Fisher, 2000; Thorbecke and Fraser, 1997). Unemployment rates as high as 50% and higher have been reported among people in tertiary care centers, people who have one or more generalized tonic-clonic seizures or complex partial seizures a year (Hauser and Hesdorffer, 1990; Thorbecke and Fraser), and people who have been discouraged from seeking employment (Fisher, 2000). Finally, the majority of employment studies have been cross-sectional, and based on relatively small and local samples. Employment rates among PWE tend to vary along with those for the general population of the region or country at the time of the study. For all these reasons, a valid assessment of the employment situation for PWE, even within a single country, is a challenging and imprecise pursuit. Early employment studies were primarily based in the US and Western Europe. A recent comprehensive literature review of the employment research in epilepsy (Smeets et al., 2007) suggested that the majority of the extant research is still based in these regions (though the search process included only research articles that had been published in English, Dutch or German, and so would produce an inherently limited sample in this respect). A notable recent increase in the number of employment studies from other countries and regions of the world is improving understanding of the international situation. Further, a simultaneous increase in attitude research among the general population and various professional groups (e.g., teachers, health workers, police) in Asia (e.g., Al-Rashed et al., 2009; Chomba et al., 2007; Kankirawatana, 1999; Wang et al., 2009), Africa (e.g., Atadzhanov et al., 2006; Mbewe et al., 2007; Sharkawy et al., 2006), North and South America (e.g., Baumann et al., 1995; Katzenstein et al., 2007; Youssef et al., 2009), Europe (e.g., Kaleyias et al., 2005; Madsen, 1996), and Australia (Beran and Read, 2007) serves to indirectly inform current understanding of employment barriers across geographic regions and cultures. In the following paragraphs we review employment rate research from around the world. In the US, a recent large community-based survey of over 1000 adults with epilepsy suggested that only 24% of participants reported full-time and 13% part-time employment. When students (20%), retired people (9%), and homemakers (6%), were excluded, 25% of the sample was still unemployed. Of these, 64% attributed unemployment to their epilepsy (Fisher et al, 2000). This study was conducted at a time when the average unemployment rate in the United States was slightly over 5%. Results from a 2005 Centers for Disease Control and Prevention (CDC) Behavioral Risk Surveillance Study (Kobau et al., 2008) summarized population-based data derived from 19 US states. Compared with controls (adults with no history of epilepsy), adults with a history of active epilepsy were more likely to report fair or poor health, be unemployed or unable to work, live in households with the lowest annual incomes, and have a history of co-occurring medical disorders. The unemployment rate for

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those with active epilepsy was 9.8%, compared to 8.3% among those with inactive epilepsy, and 5.4% for controls. Results of research based in Great Britain have provided similar results. For example, among a community-based sample in an area of Northern England characterized by lower employment, the unemployment rate for people with epilepsy was 46% compared with 19% for an age and sex-matched population without epilepsy (Elwes et al., 1991). Collings and Chappel, (1994) found an unemployment rate of nearly 12% for people with epilepsy in a community-based sample in England, compared with an unemployment rate of 9% for the general population at the time of the survey. In a study examining the employment status of 494 people with well-controlled seizures, however, in which only 15% reported having a seizure within the past year, the majority were employed and most of those who were not employed attributed the lack of a job to factors other than their epilepsy (Jacoby, 1995). In Ireland, an unemployment rate of 34% was observed, as compared to 13% in the general population (ILAE, 2003). In Germany, Bahrs (1990) reported that 24% of PWE were unemployed as opposed to 8–10% in the general population. In the Netherlands, an unemployment rate of 48% for PWE was identified, compared to 20% in the general population (Reuvekamp et al., 1999). According to the ILAE (2003), the employment situation for PWE in Central and Eastern Europe is likely to be far worse, as unemployment rates in countries in these regions are much higher. Further, 20 to 40% of PWE in that part of Europe are not receiving treatment, further exacerbating employment problems (ILAE, 2003). As noted, far fewer employment rate studies based in Asia are thus far available. In Kerala, a state in south India, Varma and colleagues (2007) evaluated employment status and reported reasons for unemployment among 202 randomly recruited patients of a comprehensive epilepsy care center. Compared to 19% of the general population, 58% of the patients with epilepsy were unemployed. Variables associated with employment included being in seizure remission for 2 years or more, monotherapy, higher level of education, and ability to drive and to travel alone. In a recent study in South Korea, Lee (2005) evaluated the employment status of 543 adult clinical patients with epilepsy. The unemployment rate for PWE was as high as 31%, and five times higher than the 4% to 6% unemployment rate among the general population. Seizure frequency, age at onset, and duration of epilepsy were associated with employment status. Prior employment research in Korea has suggested that underemployment is also a significant issue (Byun et al., 1994). Al-Saad et al., (2001) evaluated the employment of 100 patients with epilepsy attending public medical clinics in Tikrit City, Iraq in 1997. Among this sample, 33 were unemployed. About 38% of male patients and 27% of female patients were unemployed. The unemployment rate among patients whose epilepsy was uncontrolled was 43% compared to 19% for patients with controlled epilepsy. Patients living in rural areas had an unemployment rate of 42% compared with 25% among those living in urban areas. No comparison with the general population was available. As the authors noted, the employment levels among those living in Iraq will have changed since this study was conducted. There is a significant need for additional research and understanding of the employment status of individuals affected with epilepsy around the world, and particularly among developing countries and regions. The least information is currently available for those regions of the globe where reside the most people with epilepsy. The World Health Organization (WHO, 2001) reports that epilepsy affects more than 50 million people

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worldwide. Mac et al. (2007) suggested that approximately half reside in Asia. It is estimated that 10 million PWE live in Africa (WHO, 2004). In much of the world, attitudes about epilepsy, and inadequate treatment combine to prevent access to employment, education, and social participation. deBoer et al., (2008) recently noted that despite the fact that highly effective, low-cost treatments are available, as many as 90% of PWE in Africa go untreated. The incidence of epilepsy in developed countries is estimated to be between 40 and 70 per 100,000 persons per year. The incidence in developing countries is generally much higher, often above 120/100,000 per year (deBoer et al., 2008). In developed countries, the lifetime prevalence rate for epilepsy ranges from 3.5 to 10.7 per 1,000 person-years, and the incidence rate ranges from 24 to 53 per 100,000 person-years (Forsgren et al., 2005; Theodore et al., 2006). Recent reviews suggest that the lifetime prevalence rates for active epilepsy varied from 1.5 to 14 per 1,000 person-years in Asia (Mac et al., 2007), from 5.1 to 57.0 per 1,000 person-years in Latin America (Burneo et al., 2005), and from 5.2 to 74.4 per 1,000 person-years in sub-Saharan Africa (Preux and Druet-Cabanac, 2005). Somewhat better understood and more frequently investigated than the highly variable employment rates among PWE around the world, are the reasons that PWE experience employment difficulties. We address these factors and employment barriers in the next section.

Barriers to Employment for People with Epilepsy The unpredictable nature of the seizures, as well as the adverse effects of antiepilepsy medications, can make epilepsy particularly disruptive of daily life. Respondents in a recent community-based sample of over 1000 Americans with epilepsy identified uncertainty and fear of having a seizure as the worst thing about having epilepsy (Fisher et al., 2000). Yet seizures themselves are not the only, or often even the primary employment barrier. Research exploring the array of clinical and psychosocial variables that may contribute to the employment problems and barriers faced by individuals with epilepsy suggests that employment disparity is not due to any single factor but is, as Thorbecke and Fraser noted, ―the result of a bundle of aversive factors interacting with each other in a complex fashion‖ (Thorbecke and Fraser, 1997, p. 2211). Along with the physical and cognitive implications associated with seizures, epilepsy has been associated with psychological and emotional problems, social isolation, and with problems in education, family life, leisure activities, and employment (Thompson and Oxley, 1993). The stigma and social misunderstanding associated with the epilepsy label frequently result in isolation, social restriction, and barriers to psychosocial function. A number of epilepsy-related variables and potential barriers to employment have been examined for their impact on employment status. The following review outlines the findings of previous investigations. Among the most frequently evaluated clinical variables that have been investigated for relationship to employment are seizure frequency and type (e.g., Bishop, 2004; Chaplin et al., 1998; Collings, 1992; Elwes et al., 1991; Jacoby, 1995). In addition to the severity and frequency of seizures, cognitive and neuropsychological factors, social

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isolation and other psychosocial variables, level of education, and the negative attitudes of employers and society, among other variables, have been explored.

Seizure Variables The findings concerning the effect of seizure type and frequency on employment status have generally supported a direct and significant effect. Some researchers have suggested that the evidence to date does not conclusively support a direct relationship between seizure variables and employment (Hauser and Hesdorffer, 1990; Thorbecke and Fraser, 1997). Increasingly, however, unemployment has been found to be higher among individuals with more frequent and more functionally involved seizures (Bishop, 2004; Chaplin et al., 1998; Jacoby et al., 1996; Ratsepp et al., 2000; Yagi, 1998). In a sample of 312 outpatients in Japan, Yagi (1998) found that seizure frequency was related to employment. Among the patients who had six or fewer seizures per year, 83% were employed full time. Among the patients who experienced one or more seizures per month, only 31% were employed full-time. Similar results were reported in an Estonia-based study in which 90 people with epilepsy were surveyed and a significant negative relationship between seizure frequency and full time employment was found (Ratsepp et al., 2000). Jacoby et al. (1996), in a survey of an unselected population (N = 696) in the United Kingdom, also found that seizure frequency was negatively associated with employment status. In a communitybased sample of 153 adults with epilepsy in the US, seizure frequency was significantly related to employment status, with the likelihood of employment decreasing as seizure frequency increased (Bishop, 2004). Reported level of interference by seizures in daily life was also found to be significantly related to employment status in this study, as were gender and the number of antiepilepsy medications used.

Psychosocial and Demographic Variables Various psychosocial and personal factors have been found to be associated with unemployment among people with epilepsy. These factors include intelligence, education, personality, age, psychosocial functioning, and neuropsychological functioning (Bautista and Wludyka, 2007). While many people with epilepsy may have few, if any, disruptions of social interaction or psychosocial functioning, others have severe problems that make it more difficult for them to engage in fully productive lives and employment (Austin and deBoer, 1997). In general, adults with epilepsy have been found to have a higher prevalence of social problems, including social isolation and problems with adaptation, depression, anxiety (Stong, 2008), low self-esteem, low self-efficacy, and primary use of a passive coping style (Clarke et al., 2006) as compared to people in the general population (Austin and deBoer, 1997). These psychosocial problems may have a greater impact on employment outcomes for people with epilepsy than the recurring seizures (Livingston, 1981). PWE who are employed have been found to have fewer psychosocial problems than unemployed people with epilepsy (Jacoby, 1995). Co-occurring physical or psychiatric disability has been associated with lower rates of employment in several investigations (e.g., Hauser and Hesdorffer, 1990; Jacoby, 1992;

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Martin and White, 1988, Yagi, 1989). The relationship between age and employment status has been infrequently examined and with conflicting results. According to Hauser and Hesdorffer (1990) age per se is not a predictor of employment status, but age at onset of epilepsy may be. That is, earlier onset appears more likely to negatively affect employment status. This relationship too has been supported in subsequent studies. Hauser and Hesdorffer suggested that this relationship is likely confounded by the presence of concurrent underlying neurological disabilities such as cerebral palsy and intellectual disability. A number of demographic variables have been explored in previous investigations of the determinants of employment status, generally with the expected results. For example, one would expect that people with previous experiences with successful employment would be more likely to be employed. And indeed, the amount of time employed since entering the work force has been positively correlated with current employment in several studies (e.g., Chaplin et al., 1998; Hauser and Hesdorffer, 1990). Also, education level has frequently been found to be associated with employment status (e.g., Ratsepp et al., 2000; Reuvekamp et al, 1999; Scambler and Hopkins, 1980).

Stigma and Employer Attitudes It is well documented that social stigma is associated with poor psychosocial and vocational outcomes for people with epilepsy (MacLeod and Austin, 2003). Although regional and national differences have been noted, stigmatizing perceptions, negative attitudes, and misperceptions about persons with epilepsy have been found to exist among groups around the world (Baker, 2002, Livneh and Antonak, 1997). Scheid (2005) argued that one of the most critical elements in employment of people with disabilities is the degree of social acceptance in the workplace. Jacoby and associates recently suggested that for many persons with epilepsy, employer and co-worker attitudes may be the most critical determinant of their employment status and progression (2005). As Beran recently suggested, the label ―epilepsy‖ can override what one has and almost defines who one is (2008). Fear of stigma and discrimination by employers and co-workers has been identified in several studies as playing a significant role in unemployment among persons with epilepsy. In a large-scale study of adults with recently-diagnosed epilepsy, 70% reported that they expected to experience stigma and discrimination at work (Chaplin et al., 1992). It appears, however, that there is a real and quantitative difference between ―felt‖ or expected stigma or discrimination, and the experience of real or ―enacted‖ stigma and discrimination. For example, in one recent study, although almost all of the participants who had full-time employment experience after the onset of seizures believed epilepsy to be stigmatizing, fewer than a quarter could recall an occasion when they suspected that they had been victims of ―enacted‖ (as opposed to ―felt‖) stigma (Scambler and Hopkins, 1986). In a study of people with well-controlled epilepsy, Jacoby (1992) found that only 2% of participants recalled an occasion in the preceding two years when they had been treated unfairly at work because of their epilepsy, and only 3% said during the same time period that they had failed to get a job they applied for because of epilepsy. Nevertheless, nearly a third of the participants in that study (32%) felt that their epilepsy made it more difficult for them than for others to get a job. Among those who felt that having epilepsy made getting a job more difficult, 39% felt this was because employers preferred not to employ people with disabilities of any kind; one-third

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felt it was because of fear and lack of understanding about epilepsy on the part of employers; and one-fifth attributed these difficulties to the potential dangers of seizures in the workplace. Such studies clearly establish that, whether real and experienced or expected and feared, stigma and discrimination on the part of employers represent a significant and important factor in the lower employment rates observed among persons with epilepsy. Felt stigma is also associated with a high incidence of co-existing depression and other secondary health and mental health problems (Baker et al., 2000; Jacoby et al., 2005). Employer attitudes remain a significant barrier to employment (Bishop, 2002; Epilepsy Foundation of America, 2001: Jacoby et al., 2005). In the last few decades, researchers have repeatedly evaluated employers‘ attitudes toward PWE (e.g., Bishop et al., 2007; Cooper, 1995; Gade and Toutges, 1983; Jacoby et al., 2005; Hicks and Hicks, 1968, 1978, 1991; John and McLellan ,1988; Kokaska and Maslow, 1986). These studies have identified issues such as fear of increased accident rates and increased insurance rates, disruption of work flow, concerns about workers‘ safety and comfort, and increased expense associated with providing work-related accommodations. Jacoby et al. (2005) studied employers‘ attitude towards hiring and retaining PWE. They recruited 204 employers from UK companies. Twenty-six percent of respondents had experience employing people with epilepsy. Sixteen percent considered that there were no jobs in their company suitable for people with epilepsy. Twenty-one percent of respondents thought employing people with epilepsy would be ―a major issue.‖ Half of the employers expressed concerns about work-related accidents. All employers in the survey preferred that a prospective employee disclose their condition, even when in the remission. Some investigators have suggested that in the course of the last fifty years attitudes toward people with epilepsy have improved (Antonak and Livneh, 1995; Baumann, Wilson, and Wiese, 1995). For example, between 1949 and 1987, the percentage of respondents in the United States who agreed that epilepsy is a form of insanity decreased from 12% to 3%, and the percentage who would allow their child to play with a child with epilepsy increased from 57% to 89% (Bauman et al., 1995). Also, several analyses between 1956–1986 by Hicks and Hicks (1991) showed evidence of significant positive change in the attitudes of major employers in the United States. A different reality has been suggested, however, by investigators using indirect methods of attitude measurement that are less vulnerable to socially-desirable responses (Antonal and Livneh, 1995; Baumann et al., 1995; Bishop and Slevin, 2004), and by evidence, as noted by Jacoby et al. (2005), that the level of unemployment for PWE has remained fairly constant for over a 20-year period.

Disclosure of Epilepsy Status in Employment People with epilepsy are often hesitant to disclose their epilepsy status to employers in the employment application process (Bishop, 2002; Bishop and Allen, 2001; Bishop et al., 2007; So and Penry, 1981). Consideration of the appropriateness and necessity of disclosure may be influenced by legal, medical, social, and personal concerns. For example, in the US, if accommodations are needed in the application process, or if work-related accommodations are necessary, then an individual with epilepsy may need to disclose their disability status according to the provisions for reasonable accommodation afforded under the 1990 Americans with Disabilities Act (ADA). If, however, the individual applying for employment

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does not require or desire accommodation and can perform the essential functions of the position without accommodation, disclosure of an invisible disability may be neither necessary nor wise (Bishop et al., 2007). Some people with epilepsy elect to disclose their condition to potential employers for reasons other than legal requirements. Reasons for such disclosure may include a desire to feel one is being honest and ―up front‖ with employers, to enable open discussion with co-workers, or to ensure that appropriate actions will be taken in the event of a seizure, among others (Bishop, 2002; Reid, 2004). Persons with epilepsy usually use two self-disclosure strategies, general concealment and preventive disclosure, to avoid or limit stigmatization (Tröster, 1997). Tröster surveyed 119 outpatients with epilepsy to assess their willingness to disclose their epilepsy on various daily scenarios (i.e., a random contact with a stranger on a bus, a pleasant evening with an old friend, a social evening during which new members of a sports association get to know each other, a family gathering at which one gets to know one‘s future in-law, a job interview with a supervisor, and a visit of several days from a close relative), and evaluated the perceived risk that the interaction partner might find out about their epilepsy (risk of detection), and the anticipated positive and negative consequences of disclosure in these social situations. He found that, in general, people with epilepsy were willing to disclose their epilepsy. Actually, the more they feared that their interaction partner would detect their disease or find out about it in another way, the more they anticipated that disclosure would enable them to exert favorable impact on their partner‘s social judgment formation. Tröster indicated that many people with epilepsy appear to use preventive disclosure where they strive to influence social judgment formation in their social contacts by purposefully disclosing their disease to forestall stigmatization. People in Tröster‘s study expressed greatest willingness to disclose to a supervisor in a job interview and least willingness to disclose their disability to a stranger on the bus. Furthermore, participants who had faced a similar situation in the past and had disclosed their epilepsy in a specific social context reported a greater willingness to disclose than did participants who had not disclosed their epilepsy in a similar situation. Roberts and Macan, (2006) investigated the effects of timing of verbal disclosure of a disability on employment interview rating of applicants with nonvisible disabilities. They found that applicants with non-visible disabilities who chose to disclose their disability were rated as more qualified and likeable when disclosing early in an interview. Opinions about disclosure in employment vary considerably among epilepsy professionals and employers. Bishop et al., (2007) investigated whether an applicant should mention epilepsy in a cover letter among 120 employers and human resources managers in the US. They found that almost all of the respondents stated that applicants should not disclose their disability in a cover letter. In an earlier study among professionals with regional chapters of the Epilepsy Foundation of America, Bishop and Allen (2001) investigated advice given to PWE about whether to disclose epilepsy status on a job application or in initial interview. None of the chapters advised pre-employment disclosure, and 19 of the 36 respondents indicated that if disclosure is warranted, they advise people to disclose only after being hired. In contrast, in a recent study by Jacoby et al., a majority of the employers surveyed stated that any prospective employee with active epilepsy should disclose their condition, preferably very early in the recruitment process, and the vast majority felt the same way about prospective employees with well-controlled seizures (2005). As Jacoby et al. noted, ―there is a clear mismatch between the position of employers, who may see non-

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disclosure as a breach of trust and people with epilepsy, many of whom opt not to disclose out of fear of enacted stigma.‖

Work Accommodations Many people with epilepsy may need accommodations to obtain and maintain employment. Section 101(9) of the Americans with Disabilities Act (discussed further in the next section) states that ‗‗reasonable accommodation‘‘ may include: (a) making existing facilities readily accessible to and usable by an individual with disabilities; and (b) job restructuring; part-time or modified work schedules; re-assignment to a vacant position; acquisition or modification of equipment or devices; appropriate adjustment or modification of examinations, training materials, or policies; the provision of qualified readers; and other similar accommodations for individuals with disabilities (Habutzel and McMahon, 1992). Charles (2004) reported that typical accommodations include changing job duties, having another person help a worker with a disability, and providing more breaks or rest periods. However, providing special transportation, purchasing special equipment, or retraining the individual for a different job were relatively rare accommodations. For people with epilepsy, flexible work time and short breaks may be needed as a reasonable accommodation. Charles (2004) found that employees provided with reasonable accommodations were 32% less likely to quit than those not given accommodations. Similarly, Solovieva et al., (2009) found that workplace accommodations are essential for reducing unemployment among individuals with disabilities. They also reported that accommodations are effective facilitators for gainful employment. Importantly, their study debunked the myth that workplace accommodation is expensive. In this study, they conducted 1,182 follow-up telephone survey with employers who had previously contacted the Job Accommodation Network (JAN; a service provided by the U.S. Department of Labor's Office of Disability Employment Policy) to discuss disability-related accommodations for an employee or potential employee. They compared the expense associated with use of personal assistance services (PAS) for individual with disabilities to the expense incurred by individuals with disabilities who did not use PAS. PAS include (a) a job-essential task-related assistance at work, such as readers, interpreters, help with lifting or reaching, reassignment of non essential duties to coworkers, and help related to performing work tasks, and (b) may or may not include personal care-related assistance such as helping someone with toileting, eating or drinking while at work. Employers reported the median ―one-time cost‖ of accommodation for non-PAS cases was $500. The median ―one-time cost‖ of accommodations for PAS cases was $1,850. As can be observed the costs for providing accommodations to people with disabilities are relatively low and the benefits related to retention of employees with disabilities are high. Most people with epilepsy do not need accommodations to work effectively, for those who do, the adjustments are frequently inexpensive and unobtrusive. Further, the accommodations put into place for workers with epilepsy often result in increased safety for all employees (Bishop and Johnson, 2009). Examples of epilepsy-related workplace accommodations related to safety may include designating a person to respond to emergencies and know when to contact emergency services; providing a quick, unobstructed exit and posting clearly marked directions for exits and fire doors; reducing or eliminating

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situations that may make seizure activity more likely to occur, potentially including: certain fragrances or other chemicals in the workplace, excessive stress on the job, and disruption in daily activities (such as sleeping, taking medications, or eating) due to working varied shifts. Additional accommodation examples and suggestions are available through JAN, or the American Epilepsy Society, 2009.

Disability Employment Law As noted in the introduction, since 1990 there has been an increase in international attention to equity and access in employment for persons with disabilities. Many countries around the world have enacted legislation and policy to address discrimination against individuals with disabilities in employment. The legislation and regulations vary considerably in scope and focus. The following is a review of some of the employment legislation passed in this period. In the United States, the conceptualization of disability has shifted from a medical model to a socio-ecological model, emphasizing the contribution of the environment to the definition of disability and the importance of inclusion of people with disabilities in the society (Chan et al., 2009). The emphasis on disability rights has led to the enactment of several major disability related legislations aimed at protecting human rights and equal opportunities for people with disabilities including the Rehabilitation Act of 1973, the Workforce Investment Act (WIA) of 1998, and the Americans with Disabilities Act (Blanck, 2000; Schmeling et al., 2005). These disability laws have significant implications for promoting employment opportunities of people with epilepsy. Although the main purpose of the Rehabilitation Act of 1973 was to appropriate funding for state vocational rehabilitation services for people with severe disabilities, it included innovative disability legislation that provided the foundations for many of the civil rights provisions enacted in the ADA. For example, Section 501 of the Rehabilitation Act mandated ―nondiscrimination by the federal government in its own hiring practices‖ and called for each federal department, agency, and instrumentality to submit ―an affirmative action program plan for the hiring, placement, and advancement‖ of people with disabilities to the U.S. Civil Service Commission (P.L. 93-112). Section 502 mandated the elimination of architectural and transportation barriers. Section 503 prohibits discrimination in employment on the basis of physical and mental handicaps and requires affirmative action on the part of all federal contract recipients and their subcontractors who receive annual federal contracts exceeding $10,000. Such agencies were required to provide the federal government their policies of nondiscrimination covering recruiting, hiring, and promoting of people with disabilities. Section 504 prohibits the exclusion of qualified people with disabilities from participation in any federal program or activity, or from ―any program or activity receiving federal financial assistance‖ (U.S. Commission on Civil Rights, 1983, p.49). Importantly, a person with disability cannot be found unqualified without consideration of whether a reasonable accommodation would render the individual qualified‖ (U.S. Commission on Civil Rights, 1983, p.162). Section 508 requires Federal electronic and information technology to be accessible to people with disabilities. An accessible information technology system can be operated in a variety of ways in order to be accessed by people with different disabilities.

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Similarly, the Workforce Investment Act (WIA) of 1998 established state and local Workforce Investment Boards responsible for developing a ―one-stop‖ delivery system of accessible, innovative, and comprehensive employment services (Blanck and Schartz, 2001; Morris and Farah, 2002). WIA is designed to help individuals with disabilities achieve employment, economic independence, and inclusion into society (29 U.S.C. § 701(b)(1) (2000)). The Americans with Disabilities Act (ADA) of 1990 has been the most important civil rights legislation for Americans with disabilities, including PWE. The ADA ensures ―equality of opportunity, full participation, independent living, and economic self-sufficiency‖ for individuals with disabilities (§ 12101(a)(8)). Title I of the ADA specifically protected people with disabilities from employment discrimination; the law stipulates that ―No covered entity shall discriminate against a qualified individual with a disability because of the disability of such individual in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment‖ (§ 12112). Other titles of the law prohibit disability discrimination by all public entities (including public transportation) at the local (i.e. school district, municipal, city, county) and state level, public accommodations and architectural barriers, telecommunications, and additional miscellaneous provisions. Since the passage of the ADA, a series of US Supreme Court decisions considerably narrowed its scope of coverage, such that most individuals with epilepsy lost their protection against discrimination in employment (Epilepsy Foundation, 2009). Specifically, in 1999, the Supreme Court ruled that, in determining whether a person‘s impairment is a disability covered under the ADA, the effects of medication and other mitigating measures (e.g. corrective lenses, prosthetic limbs, or hearing aids) must be considered. Further narrowing of the scope of the ADA resulted from a 2002 ruling that, in order to be protected from discrimination, an individual‘s disability must severely restrict or prevent a person from engaging in major life activities such as walking, working or breathing (Epilepsy Foundation, 2009). Subsequently, courts around the US have ruled that persons with epilepsy and certain other conditions which are controlled by medication or other measures are not considered to have a disability under the ADA because they are too functional. After a conjoint effort by persons with disabilities, Epilepsy Foundation and numerous other disability advocacy groups to correct the limiting effects of the courts‘ decisions, the Americans with Disabilities Act Amendments Act (ADAAA) was enacted in 2009. This law restores the right of persons with epilepsy to be protected under the ADA and to be treated fairly by employers. The ADAAA retains the ADA's basic definition of an individual with a disability, but changes the interpretation of these statutory terms such that mitigating measures will not be considered in assessing whether an individual has a disability; impairments which substantially limit major bodily functions, including neurological function, are covered as disabilities; and episodic conditions or those in remission are covered disabilities if they would substantially limit a major life activity when active. The ADAA‘s definition of disability thus provides protection for people who manage their disease well or who are in remission (Thomas and Gostin, 2009). In conjunction with additional changes, the Amendments considerably increase the likelihood that epilepsy will be considered a covered disability.

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In Australia, the Disability Discrimination Act (Australian Government, 1992), like the ADA, requires that employers not discriminate directly by less favorable treatment, nor discriminate indirectly by treatment which is less favorable in its impact, and to make reasonable adjustments where required, and to avoid and prevent harassment (Epilepsy Australia, 2009). Under the Act, individuals can lodge complaints of discrimination and harassment with the Human Rights and Equal Opportunity Commission (HREOC). Covered disabilities include physical, intellectual, psychiatric, sensory, neurological or learning disabilities; physical disfigurement; disorders, illness or diseases that affect thought processes, perceptions of reality, emotions or judgment, or results in disturbed behaviors; and presence in body of organisms causing disease or illness (e.g., the HIV virus). The Act addresses employment, education, access to premises, accommodation, buying or selling land, activities of clubs, sport, administration of Commonwealth laws and programs, provision of goods, and services and facilities. (Australian Human Rights Commission, 2009). In Canada, the Employment Equity Act 1995 does not specify individuals with disabilities, but rather requires equal access to employment for any qualified Canadian. Inclusive practices are prescribed for employing people regardless of race, age, gender and disability (Hawthorne and Tedfor, 2009). In the UK (including Northern Ireland), the Disability Discrimination Act 1995 and Disabilities Rights Commission Act 1999 prohibits unfair discrimination against qualified job applicants and workers with disabilities, with some specific exclusions. Delaney (1998) has argued that with regard to PWE, there are some major gaps in its provisions. Like its U.S. and Australian counterparts, the UK‘s DDA, makes it unlawful for an employer to discriminate against a person with a disability on the grounds of their disability, unless such discrimination can be justified. Employers are required to make reasonable adjustments in cases where a person with a disability is put at significant disadvantage compared to someone without a disability (Jacoby et al., 2005). In Ireland, the Employment Equality Act 1998 came into force in 1999, and was amended in 2004 by the Equality Act 2004. The Acts deal with discrimination within employment on the grounds of gender, marital status, family status, age, race, religion, disability, sexual orientation, or membership of the Traveller community (Hawthorne and Tedfor, 2009). The 2000 European Union Directive for Equal Treatment established a general framework for equal treatment in employment and occupation, and addresses discrimination based on sex, race or ethnic origin, religion or belief, disability, age or sexual orientation. In South Africa, the Employment Equity Act of 2001 outlaws discrimination on the basis of disability during the recruiting process as well as within the workplace. In Costa Rica, the Equal Opportunities Law for Persons With Disabilities includes requirements for employers to establish training practices and internal review policies ―to correct and prevent future acts of discrimination.‖ Further, the government is obliged to provide technical assistance to employers ―in order for them to be able to adapt job requirements and the work environment to the needs of persons with disabilities‖ (Hawthorne and Tedfor, 2009). In Hong Kong, the 1997 Disability Discrimination Ordinance makes it illegal to discriminate against qualified persons with disabilities in employment in Hong Kong, and also to persuade someone else to discriminate. The Republic of Korea enacted the Act Relating to Employment Promotion, etc. of the Handicapped, No. 4129, in 1990. In India, the Persons With Disabilities Equal Opportunities, Protection of Rights, and Full Participation

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Act of 1995 directs government offices and educational institutions to recruit and hire disabled persons into both competitive and special employment. Israel passed the Equal Rights for People with Disabilities Law in 1998. Jordan passed the Law for the Welfare of Disabled Persons, No. 12 in 1993. (Hawthorne and Tedfor, 2009). Despite the recent progress in employment protections for PWE, there are still significant legal and attitudinal barriers to employment equality and access. In many countries, laws impacting the lives of PWE fail to adequately protect their human and worker rights. Limited protections and rights violations against PWE are prevalent in developed and developing nations all over the world (deBoer et al., 2008). Active and ongoing advocacy at the local, national, and international level is needed to continue to promote progress in employment protections and the equal employment participation of PWE, as well as prevent the narrowing and reduction of existing laws.

Employment Programs Research in Western countries indicates that employment training programs designed specifically for people with epilepsy generally achieve better results than in generalized disability programs. For example, in the US, the state-federal vocational rehabilitation (VR) program provides services to assist people with disabilities to seek, obtain, and retain employment. Although this general disability program can be a valuable resource for people with epilepsy (Goodall et al., 1994; Mount et al., 2005), the placement rates of state VR agencies of people with epilepsy consistently fall below those of specialized employment programs (Fraser, Trejo, and Blanchard, 1984). Fraser et al., (1984) found the placement rate for PWE among seven state VR agencies to range from 9-21% for applicants with epilepsy, except for one state which made special efforts to place people with epilepsy. In this case the placement rate was 44%. More recently, Mount et al. (2005) analyzed the public VR services outcomes for 156 PWE from 27 in one US state between 2000 and 2001. As in prior research, 20% of the applicants were successfully employed at case closure, compared to 42% who were closed as unsuccessful. The most frequently provided vocational services were assessment (83%), transportation services (36%), and maintenance (33%; e.g., monetary support, clothing, and shelter, etc.). Successful vocational outcome was predicted by receipt of job training and related vocational services. Demographic and personal financial status variables did not predict outcome. Bishop et al., (2001) concluded that there is a need for specialized training, information, and resources for state rehabilitation counselors who work with people with epilepsy. In the US and in various European countries many such programs are available. Components of these programs generally include neuropsychological assessment, vocational training, interviewing preparation and disclosure counseling, specialized placement services, and follow-along services. Vocational rehabilitation programs that focus on establishing workplace accommodations and developing clients‘ self-confidence and self-efficacy in dealing with work-related problems have been found to be effective (Varekamp et al., 2006). For example, the Dutch Horizon program matched employers and employees with epilepsy through negotiated shortterm work experience placements (De Boer, Aldenkamp, and Bullivant, 1994). Research has demonstrated that people with epilepsy who have a high level of self-efficacy, self-directed

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activities, active coping and social support resources are more able to accept their disabilities and more successful in seeking, securing, and maintaining employment (Smeets et al., 2007; Upton and Thompson, 1992). The improved success of such programs over generalized disability programs suggests the need to continue to develop specialized services and innovative techniques for effectively assisting PWE with the employment barriers they face in their area.

Conclusion The World Health Organization (WHO) has identified employment as an important part of public health and stated that having a job improves one‘s quality of life (WHO, 1980). The relationship between vocational outcomes and psychosocial outcomes is strong and welldocumented. Employment has a strong positive effect on self-esteem, self-fulfillment, selfimage, identity, and the well-being of PWE (Bishop et al., 2002; Collings, 1990; Jahoda, 1982; Schachter et al., 1993). Employment is also an important factor in facilitating social integration and participation (Fisher et al., 2000), and working for a paid job serves to ensure that PWE can fully participate in society (Baker, 2005). Social stigma, negative attitudes, misinformation, and lowered expectations, continue to exist in all regions of the world, creating significant barriers for PWE seeking to engage in and maintain employment. Numerous disability laws have been enacted in the past 20 years to protect the rights of PWE in the workplace, yet inequity and unfair treatment still persist. The progress that has been made in this period in promoting equality, health, and accurate information and knowledge for PWE is unrivaled in history and signals a better employment future for PWE, but work remains to be done in advocating for equal access and legal protections, changing public and employer attitudes, and developing effective and innovative methods of preparing PWE to succeed in employment.

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Hicks, R.A., and Hicks, M.J. (1968). Changes over a 10-year period (1956-1966) in the employer‘s attitudes towards the employment of epileptics. American Corrective Therapy Journal, 22, 145-147. Hicks, R.A., and Hicks, M.J. (1978). The attitude of major companies toward the employment of epileptics: An Assessment of two decades of change. American Corrective Therapy Journal, 32:180-82. Hinman, S., Means, B., Parkerson, S., and Odendahl, B. (1988). Assessment of job application and employment interview skills for job seekers with disabilities: assessor’s manual. Fayetteville: University of Arkansas, Arkansas Research and Training Center in Vocational Rehabilitation. International League Against Epilepsy. (2003). European white paper on epilepsy. Epilepsia, 44 (Suppl. 6), 49–50. Jacoby A. (1995). Impact of epilepsy on employment status: findings from a UK study of people with well-controlled people with epilepsy. Epilepsy Research, 21, 125-132. Jacoby, A. (1992). Epilepsy and the quality of everyday life: Findings from a study of people with well-controlled epilepsy. Social Science and Medicine, 34, 657-666. Jacoby, A. (1994). Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Social Science and Medicine, 38, 269-274. Jacoby, A., Baker, G. A., Steen, N., Potts, P., and Chadwick, D. W. (1996). The clinical course of epilepsy and its psychosocial correlates: findings from a U.K. community study. Epilepsia, 37, 148-161. Jacoby, A., Buck, D., Baker, G., McNamee, P. Graham-Jones, S. and Chadwick, D. (1998). Uptake and costs of care for epilepsy: Findings from a UK regional study. Epilepsia, 39, 776–786. Jacoby, A., Gorry, J., and Baker, G. A. (2005). Employers‘ attitudes to employment of people with epilepsy: Still the same old story? Epilepsia, 46, 1978-1987. Jacoby, A., Snape, D., and Baker, G. A. (2005). Epilepsy and social identity: The stigma of a chronic neurological disorder. Lancet Neurology, 4, 171-178. Jahoda, M. (1982). Employment and unemployment: A social psychological analysis. Cambridge: Cambridge University. John, C., and McLellan, D.L. (1988). Employers‘ attitudes to epilepsy. British Journal of Industrial Medicine, 45, 713-715. Johnson, W. G., and Lambrinos, J. (1985). Wage discrimination against handicapped men and women. Journal of Human Resources, 25, 32-54. Kaleyias, J., Tzoufi, M., Kotsalis, C., Papavasiliou, A., and Diamantopoulos, N. (2005). Knowledge and attitude of the Greek educational community toward epilepsy and the epileptic student. Epilepsy and Behavior, 6(2), 179-186 Kankirawatana, P. (1999). Epilepsy awareness among school teachers in Thailand. Epilepsia, 40, 497-501. Katzenstein, J.M., Fastenau, P.S., Dunn, D.W., and Austin, J.K. (2007). Teachers‘ ratings of the academic performance of children with epilepsy. Epilepsy and Behavior, 10(3), 426431 Kitchen, S. G. (2008, September 4). Job Accommodation Network. Accommodation and compliance Series: Employees with epilepsy or seizure disorders. Retrieved from: http://www.jan.wvu.edu/media/epilepsy.html

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Kobau, R., Zahran, H., Thurman, D.J., Zack, M.M., Henry, T.R., Schachter, S.C., and Price, P.H. (2008). Epilepsy surveillance among adults: 19 states, behavioral risk factor surveillance system, 2005. MMWR Surveillance Summaries, 57, 1–20. Kokaska, C.J., and Maslow, P. (1986). Employment of people with epilepsy: A review of employer attitude surveys. Journal of Rehabilitation, 52(4), 31-34. Lee, S. (2005). What we confront with employment of people with epilepsy in Korea. Epilepsia, 46(Suppl. 1), 57–58. Lim, Y-J., Chan, S-Y., and Ko, Y. (2009). Stigma and health-related quality of life in Asian adults with epilepsy. Epilepsy Research, 87, 107-119. Livingston, S. (1981). Psychosocial aspects of epilepsy. In: Perspectives on epilepsy 80/81 (pp.17-27). Berkshire: British Epilepsy Association. Livneh, H., and Antonak, R. (1997). Psychosocial adaptation to chronic illness and disability. Gaithersburg, MD: Aspen. Mac, T. L. Tran, D., Quet, F., Odermatt, P., Preux, P., and Tan, C. (2007). Epidemiology, aetiology, and clinical management of epilepsy in Asia: A systematic review. Lancet Neurology, 6, 533-543. MacLeod, J. S., and Austin, J. K. (2003). Stigma in the lives of adolescents with epilepsy: A review of the literature. Epilepsy and Behavior, 4, 112-117. Madsen, LP. (1996). Danish primary school teachers' knowledge about epilepsy in children. Ugeskrift for Laeger, 158, 1977-1980. Martin, J., and White, A. (1988). OPCS surveys of disability in Great Britain 2: The financial circumstances of disabled adults living in private households. London: HMSO. Mbewe, E., Haworth, A., Atadzhanov, M., Chomba, E., and Birbeck, G.L. (2007). Epilepsyrelated knowledge, attitudes, and practices among Zambian police officers. Epilepsy and Behavior, 10(3), 456-462. Morris, M., and Farah, L. (2002). Building relationships at a community level: Lessons learned from work incentive grantees (WIGs) (Rep. No. 1). Iowa City, IA: University of Iowa College of Law, Law, Health Policy and Disability Center. Retrieved March 25, 2004, from http://disability.law.uiowa.edu/lhpdc/projects/dol_techdocs/PolicyBrief_ Lessons_Learned. doc. Mount, D., Johnstone, B., White, C., and Sherman, A. (2005). Vocational outcomes: VR service determinants for persons with epilepsy. Journal of Vocational Rehabilitation, 23, 11-20. PAS: Center for Personal Assistance Services. Retrieved (October 17, 2009) from http://www.pascenter.org/home/index.php Preux, P.-M. and Druet-Cabanac, M. (2005). Epidemiology and etiology of epilepsy in subSaharan Africa. Lancet Neurology, 4, 21-31. Rehabilitation Act of 1973, 29 U.S.C. 701 et seq. Ratsepp, M., Oun, A.A., Haldre, S., and Kaasik, A. (2000). Felt stigma and the impact of epilepsy on employment status among Estonian people: exploratory study. Seizure, 9, 394-401. Reid R. To disclose or not: can you afford to bring your epilepsy to work? Epilepsy USA Newsletter, Epilepsy Foundation, 6 Jan 2004. Accessible at: www.epilepsyfoundation. org/epilepsyusa/disclosure.cfm. Reuvekamp, M., de Boer, H.M., Bult, I., and Overweg, J. (1999). Employment of people with epilepsy: Is there a problem? 23rd Epilepsy Congress. Medical-Science News, 6, 1759.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter VIII

Gender and Epilepsy: Clinical, Social and Psychological Impact R. Shallcross, R. L. Bromley and G. A. Baker Division of Neurosciences, The University of Liverpool, UK

Abstract People with epilepsy may be at an increased risk of experiencing biological, sociological and psychological difficulties that are related specifically to gender. Research often reports on people with epilepsy as a homogeneous group with no distinction of the possible differences regarding gender. Epidemiology, seizure types, antiepileptic drug therapy, psychosocial and biological factors regarding epilepsy, may all vary depending on gender. Moreover, it is paramount that healthcare professionals are aware of existing gender differences in regard to the treatment and management of people with epilepsy. In turn the provision of information to people with epilepsy must also take into account gender specific needs for information. In conclusion, the differences between the genders should be considered in all aspects of epilepsy research.

Introduction For people with epilepsy (PWE) there are clinical, psychological and social differences between the genders (Tauboll and Luef, 2008). The aim of this chapter is to give an overview of the gender differences that exist within many aspects of epilepsy, including epidemiological, clinical, and psychosocial differences. More specifically this chapter informs  Correspondence: Professor Gus Baker, The University of Liverpool, Division of Neurosciences, School of Clinical Sciences, Clinical Sciences centre for research and Education, Lower Lane,Liverpool L9 7LJ. Tel:0151 529 5468. E-mail: [email protected].

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on the differences in incidence, seizures type, differing impacts on educational and employment rates and differing psychosocial issues such as marriage rates and mood disorders between men with epilepsy (MWE) and women with epilepsy (WWE). Specific issues for WWE, particularly with regards to women of childbearing age will also be discussed.

Epidemiology A review of epidemiological data by Banerjee and Hauser (2007) suggest that in developed countries the incidence of epilepsy, defined as recurrent unprovoked seizures, has been estimated as 24-53 per 100,000 persons per year. In contrast to this, the incidence from developing countries has been reported to range from 77 - 190 per 100,000 (Banerjee and Hauser, 2007). A higher incidence of epilepsy within developing countries has been reported elsewhere (Kotsopoulos et al., 2002; Winkler et al., 2009). However a meta-analysis of data in 2002 found there was no significant difference between the median incidence of epilepsy in developed and developing countries (Kotsopoulos et al., 2002). This variation may be due to methodological differences, such as case ascertainment, although it seems that the amount of variation remains even when methodologies are similar. There is general agreement that within these estimates of epilepsy incidences there is a predominance of males (Hauser et al., 1993; Kotsopoulos et al., 2002; Theodore et al., 2006; Banerjee and Hauser, 2007; Benamer and Grosset, 2009). A review by Kotsopoulos and colleagues (2002) found that out of 12 studies that examined gender differences, nine found a higher incidence in males. The increased risk factors associated with males for developing epilepsy, such as stroke and head injury may help to explain the increased incidence. However a higher incidence of epilepsy is found in males when only cryptogenic and idiopathic epilepsies are included in analysis (Kotopoulos et al, 2002), supporting the notion that trauma alone cannot account for a higher incidence of epilepsy in men.

Gender Differences in Epilepsy Epilepsy Type Different epilepsy types have been assessed in their relation to gender. Men have been reported to have significantly higher rates of symptomatic localised epilepsy (Christensen et al., 2005).Women on the other hand were reported to have higher rates of cryptogenic localised epilepsy with the overall rate for cryptogenic epilepsy being higher for women (Christensen et al., 2005). For generalised epilepsies women had significantly higher rates of juvenile absence seizures and juvenile myoclonic seizures as well as significantly higher rates of idiopathic generalised epilepsy (Kleveland and Engelsen, 1998; Christensen et al., 2005; Christensen et al., 2007). The reason for the finding that women have higher rates of idiopathic generalised epilepsy is not yet established however, it has been suggested by Christensen and colleagues (2005) that WWE tend to have higher rates of idiopathic generalised epilepsy which is due to the sex hormone differences in the development of

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idiopathic generalised epilepsy. This notion is supported by their finding that the rate of idiopathic generalised epilepsy declined with increase in age (i.e. the menopause). They also suggest that the higher rates of symptomatic localised related epilepsy in men may be due to the increased risk to structural damage that occurs in men (Annegers et al., 1995; Christensen et al., 2005).

Threshold for Seizures It has been suggested that there are gender differences in seizure susceptibility. Studies into gender differences for seizure thresholds have produced differential outcomes in male and female rats depending on how seizures are induced, types of seizure induced and whether or not the female estreous cycle has been taken into account. Thomas (1990) found that at low administered doses of picrotoxin, female rats were more susceptible to myoclonic and generalized tonic-clonic seizures and that at higher administered doses of picrotoxin male rats were more susceptible to myoclonic seizures. No sex differences were found for either focal or akinetic seizures at any dose. They therefore concluded that gender differences in seizure threshold were dependent on both seizure type and dose of prcrotoxin administered (Thomas, 1990). Similarly Tan and Tan (2000) noted the differential effects of testosterone, estrogen and proestrogen on seizure latencies. They found that the administration of testosterone seemed to increase seizures in female rats and decrease seizures in male rats. The authors explained this phenomenon as testosterone administered to female rats may be converted to estrogen by aromatase, and estrogen has previously been associated with an increase in seizure activity (Woolley and Schwartzkroin, 1998). Whereas testosterone associated with a seizure-suppressing effect, may simply have a direct effect on male rats (Tan and Tan, 2001). Prestrous-females had the shortest latencies to epileptic seizures and estrous females had the longest latencies to epileptic seizures. The authors explained this as prestrous is characterized with high estrogen levels known to increase epileptic phenomena. Whereas the estrous is explained by high levels of proestrogen known to be inhibitory and seizure suppressing (Woolley and Schwartzkroin, 1998; Tan and Tan, 2001). This has led to suggestions that intermittent proestrogen therapy may be beneficial for complex partial seizures in WWE (Herzog, 1991). Further evidence of gender differences comes from studies removing the sex organs of rats. For example Kokka and colleagues (1992) removed the testes from the male rats and the ovaries from the female rats. They found that the removal of the ovaries reduced the female rat‘s seizure threshold to a similar level to the male rats and therefore concluded that the ovaries were mainly responsible for sex differences in sensitivity to induced seizures (Kokka et al., 1992). Findings from the female estrous cycle in rats may have important implications for the variance in seizure frequency reported by women with epilepsy during their menstrual cycle. Catamenial epilepsy is associated with an increase in seizures around menstruation, with an estimated prevelance of between 10-12% (Crawford, 2009). Herzog et al (1997) proposed that there are three distinct patterns of catamenial epilepsy: perimenstrual, peiovulatory and luteal. Seizure exacerbation occurs within these cycles in 71.4% of WWE (Herzog et al., 1997). The authors propose from previous research that seizures disrupt the normal neuroendocrine modulation of reproductive hormonal secretion which may lead to menstrual disorders, endocrine disorders and increased rates of infertility (Herzog et al., 1986). In ‗The

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best practice guidelines for WWE‘, Crawford and colleagues (1999) recommend that intermittent clobazam therapy (a benzodiazepine derivative) be used around menstruation to reduce the frequency of seizures. Similarly the use of the combined contraceptive pill as well as progestogen therapy may be beneficial for women with a catamenial element to their epilepsy (Crawford et al., 1999).

Status Epilepticus A study looking into the incidence of status epilepticus (SE) in Rochester Minnesota, reports male predominance for the overall occurrence of SE (Hesdorffer et al., 1998). Similarly when adjusted for age the incidence of SE was almost two-fold greater for males than for females. Non febrile SE was also greater among males than females. The authors suggested that this may be partly due to the greater incidence of acute symptomatic and remote symptomatic epilepsy in males due to the increased risk of cerebrovascular disease, brain trauma and CNS infections (Annegers et al., 1995). Another possible explanation offered by the authors was that seizure threshold, which is regulated by the substantia nigra pars reticulate (SNR), is under hormone control, with females having a higher seizure threshold than males (Hesdorffer et al., 1998; Iadarola and Gale, 1982). Further studies in Switzerland (Jallon et al., 1999; Coeytaux et al., 2000) and Germany (Knake et al., 2001) have also found, after age adjustment that there is a higher incidence of SE among men. Mortality after SE has also been found to be higher in males than females (Logroscino et al., 1997), however several studies have also found that gender is not a predicting factor in mortality rates after the occurrence of SE (Towne et al., 1994).

Sudden Unexpected Death in Epilepsy (SUDEP) Many studies assessing the incidence of SUDEP have found a higher incidence in males than females (Leestma et al., 1989; Timmings, 1993; Tennis et al., 1995; Langan, 2000). In a yearlong prospective study, over 46 reports of SUDEP were male, compared with only 14 reports of SUDEP in females (Leestma et al., 1989). Alternative data have also been published. In a prospective cohort from upper Midwestern America, three epilepsy centres followed 4,578 patients who were screened for SUDEP annually. They reported that SUDEP was higher among women than men. Studies have also failed to find gender differences in SUDEP rates (Hauser and Kurland, 1975; Nashef et al., 1995). Methodological differences may explain the conflicting gender difference within SUDEP studies. The differences within the papers include retrospective analysis of deaths in patients compared with prospective surveillance of groups of epilepsy patients and use of hospital populations compared with population based samples, all of which, may contribute to differences in findings. Prospective, population based, well controlled studies are required to further draw conclusions as to whether gender may be a risk factor for SUDEP. Interestingly, in a population based study, Opeskin and Berkovic (2003) employed two groups, a SUDEP group and a control group consisting of patients with epilepsy who had died from other causes. Within the SUDEP there was a higher incidence of male deaths, but when compared with the control group the SUDEP group had a higher proportion of females to males than the control

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group (Opeskin and Berkovic, 2003).This finding suggests that there may be gender differences with the type of mortality in PWE.

Gender Difference in Sexual Function For both MWE and WWE sex steroid hormones can be altered and affected by a complex interaction of factors; epilepsy itself, hormones and antiepileptic drug (AED) treatment. Interactions of these factors lead to an increased incidence of reproductive dysfunction in both men and women with epilepsy, although the exact mechanisms of why there is an increased incidence are not yet fully understood (Isojarvi et al., 2005; Luef, 2008; Luef and Rauchenzauner, 2009).

Women with Epilepsy The literature suggests that WWE are at an increased risk of menstrual disorders (Svalheim et al., 2003), higher rates of infertility (Webber et al., 1986; Wallace et al., 1998), polycystic ovary syndrome (Herzog, 2006), and report lower rates of sexual arousal (Bergen et al., 1992; Morrell and Guldner, 1996). Menstrual Disorders Menstrual disturbances are more frequent in WWE than women without epilepsy (Herzog et al., 2003; Svalheim et al., 2003; Herzog, 2006). Svalheim and colleagues (2003) conducted a retrospective questionnaire study assessing the menstrual cycle in WWE compared to control women. There was no difference between generalized and partial epilepsies in the rate of menstrual disturbances but the authors did note that there was a higher frequency of menstrual disorders for those WWE with higher seizure frequency. Polytherapy was associated with a higher frequency of menstrual disorders when compared with monotherapy, although seizure frequency and polytherapy were also associated and therefore may have acted as a confounder either way. Menstrual disorders, most significant implication is anovulation which leads to lower fertility rates. Anovulatory menstrual cycles are more likely to occur in WWE and the effects of the epilepsy syndrome and AED treatment may also contribute (Morrell et al., 2002; Svalheim et al., 2003). Endocrine Disorders The epilepsy syndrome per se has been shown by some to influence menstrual functioning. It has been reported that reproductive neuroendocrine changes occur depending on the laterality of focal discharges which is associated with changes in hormonal secretion at all levels of the neuroendocrine axis (hypothalamus, pituitary and peripheral gland), leading to different menstrual disorders depending on the laterality of discharges in focal epilepsy (Herzog et al., 2003). That is, WWE who have left sided temporal lobe epilepsy (TLE) have an associated increased risk of polycystic ovarian syndrome (PCOS) and WWE who have right sided TLE have an associated increased risk of hypothalamic amenorrhea (HA) (Herzog, 1993; Kalinin and Zheleznova, 2007). However, as well as evidence that suggests that

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endocrine disorders may be attributed to epilepsy per se, other data implicates AED therapy, namely Sodium Valproate (VPA), as increasing the risk of menstrual disorders such as PCOS and HA (Isojarvi et al., 1993; Svalheim et al., 2003). In PCOS the ovarian follicle fails to mature fully during the menstrual cycle, or series of cycles. The ovum is not released and is retained in the ovary in the form of a cyst, the persistent occurrence of which leads to anovulation, leading to the increase in infertility described below (Herzog, 2006). Several review articles summarise the literature on differential effects of several AEDs on endocrine function for both WWE and MWE (Isojarvi et al., 2005; Pack, 2005). Fertility Fertility rates for WWE are reportedly lower than those reported for the general female population (Dansky, Andermann, and Andermann, 1980; Webber et al., 1986; Wallace et al., 1998). In a review of data between 1935 and 1974 in Rochester, Minnesota, Webber and colleagues found that WWE had lower levels of fertility which was not accounted for by lower rates of marriage (Webber et al., 1986). Similar findings were reproduced for a UK population of women aged between 15-45: WWE had an overall rate of 47.1 live births per 1000 women compared with a rate of 62.6 live births per 1000 for the general population of women (Wallace et al., 1998). Fertility ratios for WWE aged 25-39 were significantly lower than the general population (p < 0.001) (Wallace et al., 1998). The authors suggest that the 33% reduction in fertility for WWE compared with the general population may be explained by psychosocial factors such as lower marriage rates, isolation and stigmatization or biological factors such as a higher incidence of PCOS as well as the possible role of AEDs on hormone levels. Lower fertility rates may also be a product of fear from WWE due to the possible teratogenic effects of AEDs, the lack of knowledge passed on from healthcare professionals and the lack of preconception and post birth support offered to WWE (Wallace et al., 1998; Long et al., 2001; Vazquez et al., 2007). This notion will be discussed later in the chapter. Sexuality Level of sexual drive in WWE has been reported to be lower than the comparison populations. Bergen and colleagues (1992), for example, compared a group of WWE to a control group of women and found that a greater proportion of WWE had lower sexual desire and a lower frequency of intercourse. Whilst the majority of WWE in the study did have normal sexuality, 20% of WWE reported that they ‗almost never‘ had sexual desire, compared with 2% of the control group (Bergen et al., 1992). Morrel and Guldner (1996) found that WWE experienced disorder not of their sexual desire but of sexual arousal when their epilepsy type was a generalised epilepsy or localised related epilepsy. In this study women with localised related epilepsy were also found to suffer from higher rates of sexual anxiety. Sexual dysfunction in this cohort was not found to be related to other variables such as depression or sexual experience (Morrell and Guldner, 1996). Other researchers have failed to document significant levels of difference in sexual desire (Duncan et al., 1997).

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Men with Epilepsy Fertility Data from the Roahcerts-Olmsted County Medical Records Linkage project was used by Webber and colleagues (1986) to assess the fertility of PWE within the population compared with the fertility rates of the general population. They reported that MWE had lowered fertility rates to 80% of that of the general population. MWE fared worse than WWE in terms of fertility rates (Webber et al., 1986). The literature discussed below may explain these findings. Sperm Quality Isojarvi et al (2004) concluded from their research comparing 60 MWE to 41 control men, that Oxcarbmazepine (OXC) and Carbamazepine (CBZ) were both associated with morphologically abnormal sperm, with CBZ also associated with low motility of sperm and low sperm concentration. VPA was associated with morphologically abnormal sperm, low motility of sperm and was the group with the highest frequency of any sperm abnormality. Poorer sperm quality may contribute to the lower fertility levels reported for MWE (Pack, 2005). Endocrine Disorders A study by Bauer and colleagues (2004) found that free testosterone levels were higher in control subjects than in all epilepsy patient subgroups, including untreated groups. TLE was associated with lower testosterone and free testosterone levels. Patients on the enzyme inducing drug CBZ, which is known to increase the production of the sexual hormone binding globulin, which reduces levels of free testosterone, had lower total testosterone levels when compared with VPA treated patients. The authors concluded that testicular endocrine function is adversely affected by epilepsy, in particular TLE (Bauer et al., 2004). A similar study looking at sexual interest and function as well as hormone levels in men with localization related epilepsies found that hormone levels and sexual interest/function levels were higher for MWE taking non-enzyme inducing AEDs and a control group than for MWE taking enzyme inducing AEDs (Herzog et al., 2004). The results of this study suggest that non enzyme inducing AEDs are desirable for reproductive endocrine secretion and sexual function (Herzog et al., 2004). Several review articles summarise the literature on differential effects of AEDs on endocrine function for both WWE and MWE (Isojarvi et al., 2005; Pack, 2005). Sexuality The above studies addressing the fall in testosterone in MWE, with the implication of enzyme inducing drugs as a possible causal factor, leads to sexual dysfunction, often reported in the form of erectile dysfunction and lowered sexual desire. Duncan and colleagues (2009) used questionnaires to assess the self reported level of sexual dysfunction in relation to self reported levels of depression, anxiety and quality of life. The cohort comprised of 69 MWE, on various AEDs, between the ages of 18-60. This group was compared to a group of control men. MWE had significantly higher rates of depression, anxiety and overall psychological distress when compared to control men. Similarly MWE had significantly poorer scores on measures of quality of life and quality of health. MWE also had lower self report scores

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regarding sexual desire, suggesting that MWE are less interested in sexual activity than control men. Similarly MWE rated their erectile self efficacy as poorer than the control men. No differences were found between MWE on non enzyme and enzyme inducing drugs and no differences were found depending on frequency of seizures. Marital status also had no effect on self reports on sexual functioning (Duncan et al., 2009). The notion that sexual function cannot be explained by hormone levels alone is further supported by another study addressing self reported levels of sexual desire and erectile dysfunction (Talbot et al., 2008). In this cohort of 60 MWE, taking AED monotherapy was compared to 60 control men. They reported lower levels of sexual desire and erectile dysfunction along with significantly higher levels of anxiety and depression. The authors conclude that MWE experiencing sexual dysfunction should not only be examined for endocrine disorders but should also have psychological and emotional aspects factored into a holistic, multifaceted approach to treatment (Talbot et al., 2008). Very few studies have used self reported measures to look at the influence of depression, anxiety and quality of life on sexual function of MWE. To summarise, both MWE and WWE are at an increased risk of abnormal sexual function which is likely to be attributable to epilepsy and its treatment. Abnormal sexual functioning has implications for psychosocial issues and in turn can be influenced by psychosocial variables (Laumann et al., 1999; Duncan et al., 2009). Further research regarding psychosocial factors would be beneficial to the area of sexual dysfunction in both MWE and WWE. Within the general population emotional and stress related problems, such as low emotional satisfaction and low levels of happiness among both men and women have been shown to be associated with an elevated risk of experiencing sexual difficulties in all areas of the ‗sexual response cycle‘(Laumann et al., 1999). Furthermore other psychosocial factors such as pre and post marital status (divorced, widowed, separated) are associated with an elevated risk of sexual problems, as is lower educational achievement. This has been reported to be particularly accentuated in women. Women with a college degree in America were half as likely, compared with women in America without a college degree, to suffer from problems of sexual desire, orgasm, sexual pain and sexual anxiety (Laumann et al., 1999).

Gender Differences in Psychosocial Functioning Men and Women with epilepsy are at an increased risk of encountering psychosocial problems which can affect several areas of daily functioning including physical, psychological, social and occupational aspects of life (Austin et al., 1996; Austin et al., 2007). These problems may manifest as lower fertility, increased anxiety and depression, lower marriage rates, educational underachievement, and unemployment or below expected employment status (Tettenborn et al., 2002; Austin et al., 2007). These psychosocial aspects may impact upon the Quality of Life (QOL) of persons with epilepsy. Risk factors that may predispose PWE to encounter problems within one or more psychosocial area, therefore impacting upon their QOL. Austin and colleagues (2007) comment that the contributing factors to social dysfunction are likely to be:

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Severe and frequent seizures Presence of other chronic conditions or deficits Cognitive impairment and academic underachievement Negative attitudes towards epilepsy Inadequate knowledge about epilepsy Lack of supportive family environment

In the following section we will examine whether there are gender differences within any possible predisposing factors, and whether MWE or WWE may be more prone to deficits within particular psychosocial aspects of life and if so how this impacts upon QOL.

Children with Epilepsy Education and schooling provide the basis not only for academic learning but also promote social skills and abilities that will aid the individuals throughout their lifetime. The onset of epilepsy will occur in childhood in 50% of cases, therefore seizures occurring at this time not only threaten cognitive development but also social abilities that will impact upon future social, academic and occupational functioning (Seidenberg and Berent, 1992). Intervention at school age may therefore be the key in preventing future psychosocial problems for PWE in later life. Several studies have addressed the issue of academic underachievement as well as behavioural issues of PWE during childhood and adolescent years (Seidenberg et al., 1986; Austin et al., 1998; Austin et al., 1999; Williams et al., 2001). However, only some have studied these issues in relation to gender differences. In a study by Austin and colleagues (1998) children aged 8-12 years with epilepsy were compared to children of the same age with asthma on measures of academic achievement. Children with epilepsy fared far worse than children with asthma but only within the children with epilepsy were there gender differences, with males with a high seizure severity performing worse. This is consistent with previous findings that female children with epilepsy are superior on tasks specific to language (Seidenberg et al., 1986; Austin et al., 1998). Austin and colleagues (1999) followed up the cohort four years later and found that males, aged 11-17years, across the three severity groups (high severity, low severity and inactive epilepsy) had lower mean scores than their female counterparts in all measures of academic achievement (Austin et al, 1999). Williams et al. (2001) found no gender differences in academic achievement for children with epilepsy, however this cohort comprised of a group of children with well controlled epilepsy. Whilst not all research finds boys to be at a higher risk of underachievement in education, an interaction between severity of epilepsy, male gender and academic underachievement has been noted in several studies (Seidenberg et al., 1986; Aman et al., 1992; Austin et al., 1998; Austin et al., 1999) and therefore an interaction between gender and epilepsy severity must be considered. The findings indicate that a male with epilepsy may be more at risk of educational underachievement than a female with epilepsy. Whilst girls with epilepsy seem to fare better than boys with epilepsy when it comes to academic achievement in the school aged years, studies examining other areas of psychosocial functioning in this age group have found that the impact of epilepsy may be detrimental for PWE epilepsy depending on gender.

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Adolescents with Epilepsy In a study assessing the health related quality of life (HRQOL) in adolescents with epilepsy, females had significantly poorer health perceptions and more negative attitudes towards their illness with an overall trend towards poorer HRQOL(Nolen-Hoeksema and Girus 1994). The authors suggest that teenage girls may be prone to lower self esteem due to issues with body image, which can be exacerbated by AED use; whilst girls gain body fat during puberty, an image not idealized in modern society; boys gain in height and muscle: an image very much idealized for males in society (Nolen-Hoeksema and Girgus, 1994). Females therefore may face poorer HRQOL through the influence of self esteem. Similarly the results may be explained by denial of illness from adolescent boys with epilepsy as suggested by the Nolen-Hoeksema and Girgus (1994). A similar study also found that female adolescents had lower overall HRQOL (Devinsky et al., 1999). Despite females lower self reported HRQOL, they were more likely to report greater social support than the males (Devinsky et al., 1999), a finding that is replicated by Austin et al (1996). As with all factors of QOL, severity of the epilepsy syndrome is likely to have a degree of influence. Girls with high severity epilepsy had more self anxiety, less self happiness, more negative attitudes towards their illness, more social problems, and attentional problems as well as increased aggressive behaviour in a cohort reported by Aman et al (1992), which is consistent with others (Austin et al., 1996; Austin et al., 2000). Possible explanations for greater and increasing behavioural difficulties and lower self esteem leading to poorer QOL in general and leading to HRQOL for female children and adolescents with epilepsy have been proposed. Firstly, side effects of AED treatment, such as hair loss and weight gain, may be more upsetting for girls than boys. Secondly, it is proposed that girls may have less effective coping strategies than boys, internalising stress rather than using action based coping strategies (Austin et al., 2000). Another possible explanation is that girls with high severity epilepsy, whilst having the same stressors as boys with high severity epilepsy, have their stressors exacerbated by the demands on teenage girls and young women placed on them by society. For example, feminine gender roles tend to be more depressogenic than those linked to male gender roles, which leads in turn to unassertiveness, lack of self esteem and low self expectations which may contribute to increased displays of behaviour problems (Nolen-Hoeksema and Girgus, 1994).

Employment Status and Marital Status Unemployment is associated with psychological, social and physical health risks, a link which is recognized by organisations such as the World Health Organisation (WHO, 2003). Therefore the barriers that PWE may experience in some cases, to gaining employment, may lead to an increased risk of psychological, social and physical health problems (Collings, 1990; Hermann et al., 1990). Similarly the WHO recognises that social support is also an important contributor to both physical and mental health (Wilkinson and Marmot, 2003), with long term relationships and marriage offering a form of social support. Differential social demands and expectations placed on MWE and WWE within society when it comes to employment, status and marriage will be explored.

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Research has addressed the employment, marital, and social status of PWE, and findings have been conflicting. In a review of literature discussing epilepsy and women‘s issues, it is suggested that women are not always subjected to the same limitations in employment type as men, who are more often employed as manual labourers and may consequently be restricted from these areas due to seizures and there associated risks (Tettenborn et al., 2002; Jacoby et al., 2005). Scambler and Hopkins (1980) addressed differences in gender distributions of employment for WWE and MWE compared with men and women in the general population. Looking at employment rates at the time of the study, they found that MWE had lower rates of employment (74%) than men in the general population (81%), consistent with other researchers (Scambler and Hopkins, 1980; Callaghan et al., 1992). WWE also had lower employment rates (35%) than women in the general population (45%). Callaghan and colleagues (1992) found that poor seizure control was associated with employment status. The study concluded that continuing seizures are the main adverse effect upon employment (Callaghan et al., 1992). This association between seizure severity and employment is not unexpected and highlights that the problems facing children with epilepsy in education continue into adult hood. Jahoda (1982) in analysing the psychosocial consequences of unemployment found that there was variability between the genders in terms of the psychological consequences experienced. Similarly more recent research by Theodossiou (1998) has reported that for unemployed men, the odds of reporting psychological strain and an inability to enjoy normal activities are significantly higher when compared to individuals in high earning groups. A significant difference was not reported by unemployed females for either psychological strain or an inability to enjoy normal activities. However both genders reported suffering from a loss of confidence in the unemployed group (Theodossiou, 1998). The results of this study therefore support the notion proposed by Jahoda (1982) that women show less affectedness of unemployment when compared to men due to the availability to women of an alternative to employment; the role of a housewife which provides structure, purpose and activity (Jahoda, 1982). In the study reported above regarding employment Callaghan and colleagues (1992) also assessed marital status. Only 33% of MWE were married compared with 65% of men in the community. A higher percentage of WWE were married (46%) but still differed from females within the community (73%). Epilepsy variables have been highlighted to influential on this trend, for example Dansky and colleagues, (1980) reported that age of onset (within the first decade of life) significantly reduced marriage rates for both male and female patients (Dansky et al., 1980). The finding that males with an earlier onset of epilepsy are less likely to marry has been replicated (Jacoby et al., 1996). No literature could be found assessing the possible factors contributing to lower marriage rates for PWE, which seem to be most pronounced for MWE. Possible explanations for lower marriage rates in MWE maybe that educational underachievement in boys with early onset epilepsy described earlier (Aman et al., 1992; Austin et al., 1998; Austin et al., 1999; Seidenberg et al., 1986), which may lead to an increased likelihood of unemployment. This is supported by the finding that there is a close relationship between the absence of a job and the absence of marriage among MWE (Wada et al., 2004). As discussed, marital status and employment status are very much interlinked and have different psychosocial and health implications for WWE and MWE. A review by Rosenfiled (1989) suggested that higher rates of mental health problems in married women can be

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explained by a discrepancy in ‗power‘ and ‗demands‘ between husbands and wives (Rosenfield, 1989). Domestic labour, which is often a role carried out by wives, equates to ‗low power‘, and if employment is obtained this equates to ‗high demand‘ as domestic labour continues to be mainly carried out by wives even when both parties are employed (Zick and Bryant, 1996; Bianchi et al., 2000; Coltrane, 2000; Bianchi et al., 2000; Zick and Bryant, 1996; Coltrane, 2000).

Depression and Anxiety Depression and anxiety have been reportedly found to be the most common psychiatric characteristics for PWE (Kogeorgos, Fonagy, and Scott, 1982; Kimiskidis et al., 2007). Depression and anxiety, like the previous psychosocial factors discussed can have an enormous impact on people directly and through the influence on QoL (e.g. Kimiskidis et al., 2007). Although research suggests that PWE are at an increased risk of anxiety and depression, gender differences have been reported. Older studies tended to report an increased risk for MWE to suffer from depression (Kogeorgos et al., 1982; Strauss et al., 1992) but more recent studies show the association to be the other way (Ettinger et al., 2004; Kimiskidis et al., 2007; Fuller-Thomson and Brennenstuhl, 2009). A study by Kimiskidis and colleagues (2007) aimed at addressing the association of mood disorders and other demographic variables such as gender within a cohort of PWE, reported that female gender was independently and positively associated with an increased risk for the development of anxiety and/or depression. The finding that females with epilepsy are more likely than males with epilepsy to face mental health difficulties such as anxiety and depression is consistent with other findings (Ettinger et al., 2004; Kimiskidis et al., 2007; Fuller-Thomson and Brennenstuhl, 2009). Ettinger et al (2004) concluded that the gender differences were consistent with the findings within the general population: woman have higher rates of depression than men (Lambert and Robertson, 1999). WWE of childbearing age have been reported to be at a particular risk of depression (Beghi et al., 2004). The authors suggest that this may be due to the specific issues facing WWE of childbearing age which will be discussed later in the chapter. The literature on the co-morbidity of anxiety and epilepsy suggest that certain types of anxiety are perhaps associated more with females. Jacoby and Colleagues (1996) found that women had higher rates of anxiety than men. A study by Kimiskidis and colleagues (2007) attempted to assess gender differences in regards to specific aspects of anxiety. They administered two self report questionnaires. The first questionnaire was designed to assess ‗various subjective and somatic manifestations of anxiety at a given moment‘. The second questionnaire was administered to measure ‗relatively stable individual differences in anxiety proneness as a personality trait. The findings indicated a gender difference in the latter, ‗trait anxiety‘, with WWE scoring higher for measures of anxiety as a personality trait. The authors suggest that this is consistent with findings in the general population (Kimiskidis et al., 2007). Supporting the findings that WWE show more susceptibility to anxiety than MWE, Mensah and colleagues (2007) conducted a study aimed at identifying the predictive factors for the presence of anxiety in a community identified sample of PWE. The prevalence of anxiety within the sample was 20.5% and was found to be associated with depression, lower educational attainment, unemployment and female gender (Mensah et al., 2007).

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The data regarding anxiety and depression suggests that healthcare professionals should regularly assess levels of depression and anxiety within their epilepsy patients as studies have shown that 1/3 of patients with epilepsy who were depressed had not consulted with any mental health professional in the preceding year (Fuller-Thomson and Brennensthul, 2009). Depression and severe generalised anxiety disorder can lead to suicide tendencies which are common within chronic conditions such as epilepsy (Kalinin and Polyanskiy, 2005; Christensen et al., 2007; Verrotti et al., 2008). In a study spanning two years conducted by Hawton and his associates in 1980, the prevalence rates of PWE admitted to hospital after attempted suicide were increased fivefold when compared to the general population. The proportion of males attempting suicide within this population was particularly elevated. Using a background rate (6.2 per 1000) of attempts of suicide in the general population Hawton and colleagues found an increase in the rate for WWE (23.6 per 1000) and for MWE a further increase in rate (52.2 per 1000) of attempted suicide. The authors suggest that young males with epilepsy may experience particular difficulties socially, including higher rates of unemployment as a large proportion were unemployed perhaps leading to this increase in potential risk (Hawton et al., 1980). Inconsistent with the reports from Hawthon and colleagues (1980), is research by Kalinin and Polyanskiy (2005) showing that female gender was more strongly associated with suicide attempts in PWE. Cognitive deterioration was found to be a risk factor for attempted suicide in both WWE and MWE. However, depression was found to be a risk factor for attempted suicide only in WWE. Research into gender differences of suicidal behaviour are contradictory with some papers finding a predominance in MWE (Hawton et al., 1980; Christensen et al., 2007) and other papers concluding a predominance in WWE (Kalinin and Polyanskiy, 2005). These differences may be explained when other factors are taken into account such as AED use, type of seizures and the existence of affective disorders and the use of more representative samples when exploring the issue of suicide and gender (Kalinin and Polyanskiy, 2005). For further information regarding the complex interaction of gender and other risk factors associated with suicide in PWE readers are referred to a review by Verrotti and colleagues (2008). In summary, Epilepsy presents a number of psychosocial challenges to both male and female sufferers. Epilepsy and its treatment influence a number of life events specific to women (e.g. pregnancy and menopause) which are the focus of the next section.

Specific Issues for Women with Epilepsy Contraception and Pregnancy Enzyme inducing AEDs are known to interfere with oral contraceptives (OC). For a review see Cramer and colleagues (Cramer et al., 2007). Despite this being documented in the literature and reported by drug companies to prescribers, there is evidence to suggest that a high number of health care professionals are not aware of this interaction. In a study by Long and Montouris (2005) only 70% of physicians reported knowledge regarding the interaction of enzyme inducing AEDs and OCs (Long and Montouris, 2005). WWE have also been found to have insufficient levels of knowledge regarding AED and OC interaction (Crawford and Lee, 1999) and better strategies to convey information are called for (Kampman et al., 2005).

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In the most recent study into the knowledge of WWE regarding OCs, only 65% of WWE using enzyme inducing drugs were aware of their interaction with the OC pill (Pack et al. 2009). Luef (2009) suggests that intrauterine devices are likely to be the most effective alternative form of OC as with this form of contraception there is no drug-drug interaction (Luef, 2009). A further area of concern for WWE is pregnancy. There is evidence that WWE are at an increased risk of pregnancy complications including mild pre-eclasmpsia, vaginal bleeding, hypertension, preterm delivery caesarean section and spontaneous abortion/ foetal loss (Viinikainen et al., 2007; Thomas et al., 2008; Borthen et al., 2009; Veiby et al., 2009; Mawer et al., 2010). Although there are differences in the exact pregnancy complications reported, possibly due to methodological differences, women with treated epilepsy have been reported to be at the largest risk (Borthen et al., 2009; Veiby et al., 2009). Exposure to VPA in utero is associated with the largest increase in the risk of congenital malformations (Samren et al., 1997; Morrow et al., 2006; Mawer et al., 2010). Estimates regarding the number of children with congenital malformations following exposure in utero varies by study, however a recent meta-analysis (59 studies) reports 10.73% for VPA, 7.36% for phenytoin (PHT), 4.62% for CBZ, 4.91% for Phenobarbital (PB) and 2.91% for Lamotrigine (LTG) exposure (Meador et al., 2008). There is evidence that the newer AEDs such as Levetiracetam (LVT), OXC Gabapentin (GBP) may be associated with lower levels of major congenital malformations (Hunt et al., 2006; Sabers et al., 2003) although larger cohorts are required. Concern has recently been raised by the UK Epilepsy and Pregnancy Register over the malformation rate associated with Topiramate (TPM) exposure in utero (Hunt et al., 2008) but again more research is needed to ensure that there is comprehensive information available to WWE who are planning a pregnancy. Further risks to the physical development of the child following exposure to AEDs in utero include dysmorphic facial presentation (Kini et al., 2006) and an increased risk of minor congenital anomalies (Yerby et al., 1992; Thomas et al., 2001). Research into the incidence of more minor congenital outcomes is far from comprehensive and more research is required. In addition to the physical risks to the child associated with the treatment of epilepsy, there is a growing evidence base that the cognitive functioning of the child in later life is affected by exposure in utero to AEDs (Adab et al., 2004; Meador et al., 2009). Consistent with the findings relating to major malformations children exposed to VPA in utero appear to have the highest risk of poorer cognitive abilities (Bromley et al., 2009; Meador et al., 2009). Cognitive abilities such as IQ, memory, language, attention and planning are highly correlated with educational achievement, social abilities and occupational attainment later in life (Barnett, 1995). Therefore the effects of in utero exposure to AEDs could be as far reaching as adulthood (Reinisch et al., 1995). Neurodevelopmental disorders have also been reportedly associated with in utero exposure to AEDs, in particular VPA (Moore et al., 2000; Williams et al., 2001; Rasalam et al., 2005; Bromley et al., 2008). Despite only a few human studies there is a wealth of evidence from animal studies suggesting an association between in utero exposure to VPA and an increase in autistic spectrum disorders (Ingram et al., 2000; Schneider and Przewlocki, 2005; Wagner et al., 2006). It is hypothesized that the increased presence of neurodevelopmental disorders and the increased risk of poorer cognitive abilities are underpinned by alterations in the normal neuronal development processes (Olney et al., 2000; Rinaldi et al., 2008). Exposure to certain AEDs in utero have been shown to alter all stages of neuronal development including neurogenesis, migration, synaptogenesis and

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programmed cell death in animal models (Bittigau et al., 2002; Kaindl et al., 2006; Kim, Kondratyev, and Gale, 2007; Rinaldi et al., 2008). The extent of the risks associated with AED treatment is not yet fully documented with questions still unanswered regarding malformation rates in the newer AEDs and the increased risk of neurodevelopmental disorders and cognitive difficulties for all of the AEDs. Maternal anxiety around the welfare of their unborn child is common (Huizink et al., 2004). Evidence of increased rates of physical malformations and developmental difficulites in association with AED treatment is likely to lead to an increase in maternal anxiety. Vazquez et al (2007) found that 69% of WWE under the age of 35 years were ‗very concerned‘ or ‗extremely concerned‘ about the effect of AEDs on pregnancy. In this same study 38% of respondents had reported that these concerns had impacted on their decision to have children (Vazquez et al., 2007). In addition, Mawer et al (2010) documented a decision to terminate the foetus due to severe maternal anxiety surrounding the potential for teratogenicity of her AED treatment. Similarly, knowledge and anxiety surrounding pregnancy, its outcome and AED treatment may lead to a sudden abstinence from AED treatment (Williams et al 2002; May, 2009). To avoid such situations recent guidelines suggest that the treatment of epilepsy must be discussed prior to conception, where comprehensive information about the risk associated with treatment and treatment withdrawal without medical supervision are openly discussed (e.g. Crawford and Lee 1999). Unwanted pregnancies however will not be covered necessarily by preconceptual counselling as many women may not feel it is needed at that particular time. However, a high incidence of unplanned pregnancy have been reported in cohorts of WWE (Bell et al 2002; May, 2009). For this reason the onset of AED treatment in young females with epilepsy must be considered carefully, and throughout the child bearing years, risks to the potential child must be discussed regularly by a number of health professionals (Crawford and Hudson, 2003; Vazquez et al., 2007). Recently the American Academy of Neurology has released guidance that VPA should not be the first line treatment for women of child bearing age where possible (Harden et al., 2009). Guilt may be experienced by WWE whose children have been diagnosed with a foetal anticonvulsant syndrome or who simply attribute their children‘s difficulties to their medication use during pregnancy. Although no research has looked specifically at maternal responses to a diagnosis of foetal anticonvulsant syndrome there is evidence of increased levels of maternal guilt from studies into other exposures (Gutterman et al., 1986; Velez and Jansson, 2008). Feelings of guilt may have an affect on the mental health of the mother with epilepsy, which as noted above is already high in WWE of child bearing age (Beghi et al 2004). In summary, WWE have a number of important considerations to make surrounding contraception, AED choice and pregnancy. Unfortunately certain AED treatments are associated with increased risks but the extent of the risks are not yet fully documented. Providing WWE with all the information they require to make informed decisions over AED treatment is therefore difficult. Concern regarding contraception and pregnancy outcomes may pose an increased risk to the mental health of WWE, a group already noted to be high risk for depression (Beghi et al 2004). Support and information about contraception and pregnancy is required and must be presented clearly to the female with epilepsy to reduce, where possible, the anxiety and depression that may be associated with such decisions.

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Transfer of Knowledge Discussed above are the findings of various research areas and their conclusions in regards to gender differences within epilepsy. However research does not stop at the publication of research findings. It is important that the knowledge gained from research is then transferred to health care professionals who are likely to encounter and provide care for WWE and MWE. In turn then, this knowledge should also be effectively transferred to patients so that they can come to an informed decision along with their health care provider as to the best possible course of action for their individual and specific needs with particular regard to gender issues.

Information Provision for PWE Over the past decade there has been an increasing amount of focus on ‗Women‘s issues‘ in Epilepsy (Sare et al., 2007). Research has focused on the knowledge of healthcare professionals in regards to contraception (Krauss et al., 1996; Long and Montouris, 2005), hormone effects on seizures, reproductive disorders, pregnancy risks, teratogenic effects of AEDs and risks of osteoporosis (Crawford et al., 1999; Morrell et al., 2000). Highlighting the emphasis that has been placed on women‘s issues is the development of a questionnaire designed to assess patient and healthcare professional‘s knowledge of WWE issues: The ‗Knowledge of women‘s issues and epilepsy (KOWIE-II) (Long et al., 2005). More recently several studies have tried to address the amount of information provision for WWE from their healthcare professionals. (Crawford et al., 1999; Bell et al., 2002; Crawford and Hudson, 2003; Vazquez et al., 2007; Pack et al., 2009). Research has demonstrated that WWE lack knowledge on: contraception, folic acid use, pregnancy and teratogenicity, breastfeeding, weight gain, menopause, bone mass reduction, sexual functioning as well as the dangers of self stopping medication (Crawford and Lee, 1999; Long et al., 2001; Bell et al., 2002; Williams et al., 2002; Crawford and Hudson, 2003; Pack et al., 2009; Vazquez et al., 2007; May et al., 2009). The findings of such papers highlighted a problem in the transfer of research knowledge to WWE. More recent papers (Pack et al., 2009; Vazquez et al., 2007) show that although improvements have been made in the provision of information to WWE, there is still some way to go in regards to the counselling of WWE. Comparatively, a vast shortage of research addressing information provision for MWE is noted here. To our knowledge only a single paper addresses ‗men‘s issues‘ in epilepsy and the provision of information to MWE (Sare et al., 2007). Major concerns for MWE were driving, employment, including type of job, however it must be borne in mind that these are not issues that solely affect men, rather they are the things that concern men the most in regards to their epilepsy. MWE also reported concerns regarding their children inheriting epilepsy, and over a quarter expressed anxieties about the effects of AEDs on their unborn children. In stark contrast to WWE there is little research regarding this particular concern, similarly information regarding fatherhood is also scant (Sare et al., 2007). No research has been conducted into the knowledge of either healthcare professionals, or MWE, in regards to issues specifically concerning MWE.

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The initiation of preconception counselling (PCC) has been a very important progression within the treatment of WWE over the past few decades (Crawford et al., 1999), and is aimed at reducing the lack of knowledge about ‗women‘s issues‘ especially regarding pregnancy. Readers are referred to a recent Cochrane review by Winterbottom and colleagues (Winterbottom et al., 2009): a review of whether PCC reduces adverse pregnancy outcomes. Similarly Crawford and colleagues (1999) outline ‗the best practice guidelines for the management of women with epilepsy‘. The literature regarding PCC focuses on WWE only. This includes aspects of PCC such as child care which are also solely aimed at women in the literature. Information regarding the care of children for WWE includes: feeding the child whilst sat on the floor with back against the wall, sponging the child instead of giving a bath, using prams with ‗dead mans‘ handle and reigns on toddlers so that they can not wander away (Crawford et al., 1999). Childcare is no longer solely a ‗women‘s issue‘. This is not reflected within the literature where there is no mention of fathers with epilepsy who may also find this information both useful and confidence-building in order to enable father‘s to help look after their children.

Ways to Improve the Provision of Information to PWE In one of the few studies to address how WWE would like to be informed on pregnancy and epilepsy issues it was found that WWE expressed a desire to be informed before the time that information was actually needed. For example WWE wanted to be informed at puberty in regards to epilepsy, menstrual cycles and contraception. Similarly information on pregnancy was desired before conception whilst considering pregnancy. When asked how they would like to receive information, 59% of WWE stated that they would like information to be provided in a written format, with 28% wanting information to be provided by their healthcare professional through conversation. Similarly a more recent paper (May et al., 2009) supported these findings with 60% wanting personal counselling from their physician and 32% wanting information to be provided in easy-to–understand brochures. Interestingly, in this paper WWE also suggested that they would find educational courses beneficial (31%). It therefore seems that combining these forms of information provision, with a particular emphasis for providing written information that may be taken away, kept and re-referred to, may help improve the transfer of knowledge from healthcare professionals to WWE (Crawford and Hudson, 2003). In the only study looking at MWE‘s preferences on information provision, 57.3% of MWE reported that they would prefer to access information via their GP, 34.1% would prefer to access information via the internet and 25.5% would prefer written information through books and leaflets regarding their epilepsy. Interestingly, 34% of MWE preferred to obtain information in a way that meant no face-face contact (i.e. internet or phone; Sare et al., 2007). Similarities can be seen between MWE and WWE in regard to the preference for the provision of information, with both preferring information to be obtained from their GP, possibly reflecting issues of accessibility. However it could be proposed, based on the research that a greater proportion of MWE may want non face-to-face contact when it comes to the provision of information (Sare et al, 2007), whereas a greater proportion of WWE may prefer face to face contact in the form of educational courses (May et al., 2009). Further research is needed to elaborate on such an important issue.

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Conclusion Above, the notion that PWE experience gender related sociological and psychological difficulties is explored (Tauboll and Luef, 2008). There is general agreement that within estimates of epilepsy incidence that there is a predominance of males (e.g. Hauser et al., 1993; Kotsopoulos 2002). The increased risk factors associated with males for developing epilepsy such as stroke and head injury may go some way in explaining this increased incidence. Different epilepsy types have been related to gender specific incidences. Similarly, results from research suggest that there are gender differences in seizure susceptibility. Status epilepticus has been found to have a predominance in MWE (Hesdorffer et al., 1998; Jallon et al., 1999; Coeytaux et al., 2000; Knake et al., 2001). Similarly, SUDEP has been found to have a higher incidence in males than females (Timmings, 1993; Leestma, 1989; Langan, 2000; Tennis, 1995), although there is contradicting evidence. Literature suggests that for both men and women, sex steroid hormones can be altered and affected by a complex interaction of factors; epilepsy itself, hormones and AED treatment. Interactions of these factors lead to an increased incidence of reproductive dysfunction in both men and women with epilepsy, although the exact mechanisms of why there is increased incidences are not yet fully understood (Luef and Rauchenzauner, 2009; Isojarvi et al., 2005; Luef, 2008). WWE are at an increased risk of menstrual disorders (Svalheim et al., 2003), higher rates of infertility (Webber et al., 1996; Wallace et al., 1998), higher rates of polycystic ovary syndrome (Herzog, 2006), and report lower rates of sexual arousal (Morrel and Guldner, 1996; Bergen et al., 1992), whereas MWE are at an increased risk of abnormal sperm (Isojarvi et al., 2004; Bauer et al., 2004), erectile dysfunction and lowered sexual desire (Duncan et al., 2009; Talbot et al., 2008). A review of the literature also suggests that men and women with epilepsy are at an increased risk of encountering psychosocial problems which can affect several areas of daily functioning including physical, psychological, social and occupational aspects of life (Austin et al., 1996 and 2007). These problems may manifest as lower fertility rates, increased anxiety and depression rates, lower marriage rates, educational underachievement, and unemployment or below expected employment status (Austin et al., 2007 and Tenttenborn et al., 2002). These psychosocial aspects may impact upon the QOL of persons with epilepsy. WWE face additional issues in regards to their epilepsy including difficulties with the interaction of contraception and AEDs (Cramer et al., 2007; Luef, 2009), an increased risk of pregnancy complications (Viinikainen et al., 2006; Borthen et al., 2009; Veiby et al., 2009; Mawer et al., 2010) and increased rates of adverse outcomes in children (e.g. Samren et al 1997, Adab et al., 2004, Kini et al., 2006, Morrow et al., 2006, Bromley et al., 2009, Mawer et al., 2010). These additional issues have all been linked to increased levels of concern and anxiety which could precipitate higher levels of mental health difficulties which are already elevated within this group. To reduce the psychological impact, information provision regarding these issues needs to be effective and comprehensive. The initiation of preconception counselling has been a very important progression within the treatment of WWE over the past few decades (Crawford et al., 1999). A similar level of information transfer needs to be implemented for MWE for whom a substantial number have concerns related to the effects their epilepsy and its treatment has on themselves and on their children. Looking at ways to improve the information provision to both WWE and MWE should be the

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goal of future research in this area. The differences between the genders should be considered in all aspects of epilepsy research.

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Theodore, W. H., Spencer, S. S., Wiebe, S., Langfitt, J. T., Ali, A., Shafer, P. O. et al. (2006). Epilepsy in North America: a report prepared under the auspices of the global campaign against epilepsy, the International Bureau for Epilepsy, the International League Against Epilepsy, and the World Health Organization. Epilepsia, 47, 1700-1722. Theodossiou, I. (1998). The effects of low-pay and unemployment on psychological wellbeing: a logistic regression approach. J. Health Econ., 17, 85-104. Thomas, J. (1990). Gender difference in susceptibility to picrotoxin-induced seizures is seizure- and stimulation-dependent. Brain Res. Bull., 24, 7-10. Thomas, S. V., Ajaykumar, B., Sindhu, K., Francis, E., Namboodiri, N., Sivasankaran, S. et al. (2008). Cardiac malformations are increased in infants of mothers with epilepsy. Pediatr. Cardiol., 29, 604-608. Thomas, S. V., Indrani, L., Devi, G. C., Jacob, S., Beegum, J., Jacob, P. P. et al. (2001). Pregnancy in women with epilepsy : preliminary results of Kerala registry of epilepsy and pregnancy. Neurol. India, 49, 60-66. Timmings, P. L. (1993). Sudden unexpected death in epilepsy: a local audit. Seizure., 2, 287290. Towne, A. R., Pellock, J. M., Ko, D., and DeLorenzo, R. J. (1994). Determinants of mortality in status epilepticus. Epilepsia, 35, 27-34. Vazquez, B., Gibson, P., and Kustra, R. (2007). Epilepsy and women's health issues: unmet needs--survey results from women with epilepsy. Epilepsy Behav., 10, 163-169. Veiby, G., Daltveit, A. K., Engelsen, B. A., and Gilhus, N. E. (2009). Pregnancy, delivery, and outcome for the child in maternal epilepsy. Epilepsia, 50, 2130-2139. Velez, M. and Jansson, L. M. (2008). The Opioid dependent mother and newborn dyad: nonpharmacologic care. J. Addict. Med., 2, 113-120. Verrotti, A., Cicconetti, A., Scorrano, B., De, B. D., Cotellessa, C., Chiarelli, F. et al. (2008). Epilepsy and suicide: pathogenesis, risk factors, and prevention. Neuropsychiatr. Dis. Treat., 4, 365-370. Viinikainen, K., Heinonen, S., Eriksson, K., and Kalviainen, R. (2006). Community-based, prospective, controlled study of obstetric and neonatal outcome of 179 pregnancies in women with epilepsy. Epilepsia, 47, 186-192. Viinikainen, K., Heinonen, S., Eriksson, K., and Kalviainen, R. (2007). Fertility in women with active epilepsy. Neurology, 69, 2107-2108. Wada, K., Iwasa, H., Okada, M., Kawata, Y., Murakami, T., Kamata, A. et al. (2004). Marital status of patients with epilepsy with special reference to the influence of epileptic seizures on the patient's married life. Epilepsia, 45 Suppl 8, 33-36. Wagner, G. C., Reuhl, K. R., Cheh, M., McRae, P., and Halladay, A. K. (2006). A new neurobehavioral model of autism in mice: pre- and postnatal exposure to sodium valproate. J. Autism Dev. Disord., 36, 779-793. Wallace, H., Shorvon, S., and Tallis, R. (1998). Age-specific incidence and prevalence rates of treated epilepsy in an unselected population of 2,052,922 and age-specific fertility rates of women with epilepsy. Lancet, 352, 1970-1973. Webber, M. P., Hauser, W. A., Ottman, R., and Annegers, J. F. (1986). Fertility in persons with epilepsy: 1935-1974. Epilepsia, 27, 746-752. Wilkinson, R. and Marmot, M. (2003). Social Determinants of Health: The Solid Facts. (Second Edition ed.) World Health Organisation.

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Williams, J., Myson, V., Steward, S., Jones, G., Wilson, J. F., Kerr, M. P. et al. (2002). Selfdiscontinuation of antiepileptic medication in pregnancy: detection by hair analysis. Epilepsia, 43, 824-831. Williams, J., Phillips, T., Griebel, M. L., Sharp, G. B., Lange, B., Edgar, T. et al. (2001). Factors associated with academic achievement in children with controlled epilepsy. Epilepsy Behav., 2, 217-223. Winkler, A. S., Kerschbaumsteiner, K., Stelzhammer, B., Meindl, M., Kaaya, J., and Schmutzhard, E. (2009). Prevalence, incidence, and clinical characteristics of epilepsy: a community based door-to-door study in northern Tanzania. Epilepsia, 50, 2310-2313. Winterbottom, J., Smyth, R., Jacoby, A., and Baker, G. A. (2009). Preconception counselling for women with epilepsy to reduce adverse pregnancy outcome (Review). The Cochrane Collaboration. Woolley, C. S. and Schwartzkroin, P. A. (1998). Hormonal effects on the brain. Epilepsia, 39 Suppl 8, S2-S8. Yerby, M. S., Leavitt, A., Erickson, D. M., McCormick, K. B., Loewenson, R. B., Sells, C. J. et al. (1992). Antiepileptics and the development of congenital anomalies. Neurology, 42, 132-140. Zick, C. D. and Bryant, W. K. (1996). A New look at parents' time spent in child care: primary and secondary time use. Social Science Research, 25, 260-280

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter IX

Sociology and Epilepsy: Mind-body Medicalisation Peter Morrall

University of Leeds, United Kingdom

Abstract Few, if any, areas of human performance have succumbed to such persistent negative attribution and such sustained medical management than has epilepsy. Mental disorder (and there is an historic relationship between madness and epilepsy) and other forms of somatic disorder (from which epilepsy is distinguishable because it also involves the mind), are not only under the province of the medical discourse, but are soaked in stigma. At the micro level mental and somatic ‗disorder‘ threatens personal order, and at the macro level social order. But, and perhaps uniquely, epilepsy has faced double-jeopardy as a deviance (disorder) category. It has attracted stigmatisation and medicalisation of the mind and body. Interpersonal and social reaction to epilepsy results in subjective experiences of ‗shame‘, ‗spoiled identity‘, ‗discredited status‘, and ‗hidden distress‘. Today medicalisation has spread to healthism, and body-mind perfectionism has become normalised, commodified, and is becoming globalised. Under these circumstances not only are the experiences of shame etc. more poignant, but epilepsy is more than ever succumbing to the exigencies of the clinical gaze throughout the world. However, there are many ironies associated with epilepsy: the globalisation of medicalised epilepsy is occurring despite epistemological challenges to the power of medicine, and the demedicalisation and normalisation endeavours of (de)constructionist social scientists and disability activists; epilepsy is still used as a (medical) defence against a murder charge in some countries, thereby maintaining it‘s reputation as a pathological and dangerous condition; neurologists try to control seizures whilst psychiatrists continue to induce seizures as a treatment for madness; the emergence of neurology generally and neuropsychiatry specifically as the dominant disciplines for the management of epilepsy reinforces mind-body medicalisation; and stigma persists. Furthermore, the paradoxical (and realist) conclusion reached in this chapter is that ‗managed stigma‘ is a price worth  Correspondence: Dr Peter Morrall, School of Healthcare, Baines Wing, University of Leeds, Leeds LS2 9UT, United Kingdom. Email: [email protected].

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Introduction Few areas of human performance have succumbed to such persistent and sustained medical management - and concomitant negative attribution - than has epilepsy. Thousands of psychological and somatic states have been captured and categorised by the profession of medicine and subsumed within one of the many strands that make-up what can be generalised as the medical discourse. Multitudinous facets of human performance (thoughts, emotions and behaviours) have been, and are increasingly being, classified as pathological. But the medicalisation of some aspects of human performance are associated with a high degree of social and self censure. Mental illness generally (particularly schizophrenia) and some physical diseases (especially, HIV/AIDS) are soaked in stigma arising from prejudicial historical and structural processes, and interpersonal and intrapersonal reactions. Collective criticism towards epilepsy and internalised criticism for being epileptic have and do foment subjective experiences of ‗shame‘, ‗spoiled identity‘, ‗discredited status‘, and ‗hidden distress‘ and institutionalised and internationalised discrimination (World Health Organisation, 2009; Scambler, 2004; Jacoby, 2007; Conrad, 2007). At the micro level mental and somatic disorder disturbs personal order, and at the macro level it threatens social order. In this sense any perceived variation in health norms (which in themselves vary over time and between cultures) can be considered social deviances. But, and perhaps uniquely, epilepsy has faced double-jeopardy as a social deviance (disorder of health) category. It has attracted medico-stigmata of the mind and body. There has been a close historic relationship between madness and epilepsy, and that there is something wrong with the mind of the epileptic continues to be a popular assumption. The physical nature of epilepsy is obvious because, first, seizures (which traditionally were the only signs/symptoms used to diagnose the condition) are usually observable bodily displays, and second, the neurological basis of seizures (which is the focus for contemporary diagnosis) has been established firmly. The medicalisation of Western society was seeded in ancient civilisations (for example, Babylonian, Egyptian, Indian Ayurveda, Islamic, and Greco-Roman), and then intellectually fertilised by the rationalist ideas of the European Enlightenment. Medicalisation as a social process then blossomed in the 19th century and early part of the 20th century because the profession of medicine‘s interventionist husbandry became ever more powerful. By the midtwentieth century, however, medicalisation was being genetically modified into an even more expansive variety of cultural infestation: healthism (Crawford, 1984). While the medical profession‘s origins were rooted in the body, one of its major discursive branches spread into the mind. Sigmund Freud (1856-1939), the originator of the modern ‗scientific‘ study of the mind (psychology) and talking-therapies (psychoanalysis in particular and psychotherapy generally), had trained as a medical practitioner as had many of his disciples. But madness became colonised by the medical profession long before Freud‘s meddling with the mind. The management of the madhouses during the 19th century in Europe (and the colonies of European countries, as well as the former colony of the USA), had been taken over by medical practitioners. This period Andrew Scull (1984) describes as

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‗asylumdom‘. Asylumdom affected those people with epilepsy either because they were considered mad and so also entered the madhouse (where ironically medically induced seizures were to be – and still are – used to temper madness) or were incarcerated within specialist asylums, the ‗epileptic colonies‘. Healthism accommodated somatic medicalisation, and then advanced way beyond physical aspects of human performance to the whole of the human body. Having first harvested the corporeal, healthism is today reaping the psyche through the development of mental well-being (‗positive‘) psychologies and psychological treatments (cognitivebehavioural therapies). Together medicalisation and its mutation of healthism is promoting, normalising, and commodifying body-mind perfectionism. ‗Good health‘ becomes equated with ‗good citizen‘. Reasons to be cheerful and advice on being active abound. Not to be fully physically and mentally fit is socially discreditable. But medicalisation is not only sweeping through the human body and mind, but through the world. Globalisation is a dynamic and momentous world-wide cultural, economic, and technological social process stimulated by Western ideals including those associated with Western medicine. As Western medicine has spread so has medicalisation and so increasingly will healthism. For example, cosmetic surgery is in no short supply in Mumbai (nearly half-amillion ‗Google‘ references 5/32010), Shanghai (300,000), and Rio de Janeiro (110,000). The globalisation of medicalisation/healthism will affirm the tendency for any digression from body or mind perfectionism to be construed as social deviance wherever it occurs. Epilepsy is construed as deviating from both body and mind perfection. That epilepsy has succumbed to the exigencies of what Michel Foucault, (1973) described as the ‗clinical gaze‘ is patent. However, the clinical gaze on epilepsy is now penetrative and panoptical. For example, the World Health Organisation (WHO, 2009) records that of the 50 million people globally (potentially) diagnosed with epilepsy, 70% could respond to medical treatment. So, the WHO recommends adopting the clinical gaze world-wide. The nature of the recommended universal clinical gaze accentuates the perception of epilepsy as a mind-body disorder because most contemporary research, diagnoses, and treatment focuses on neuropathology. The British National Society for Epilepsy (NSE) states: What is Epilepsy: It is the most common serious neurological condition in the UK and possibly the world……….at least 456,000 people with epilepsy in the UK….. There are over 40 [medical] types of epilepsy. (NSE, 2009)

Listed under the NSE‘s main research activities are projects on brain-imaging, neurogenetics, clinical pharmacology, cognitive neuroscience, clinical neurophysiology, neuropathy, and neuropsychiatry. Neuropathology de facto posits physical causes of ‗mental‘ problems, especially if there is a historical and persistent perception which reinforces this medicalised stance. Many mental disorders are today also subsumed under this neurological-orientated clinical gaze. However, epilepsy (given the wide range of levels and accepted diagnostic uncertainties) stands out as a disorder which can be relatively easily demonstrated to be neuropathological in origin through modern medical technological assessment. Under these circumstances, for

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the person with epilepsy both ‗felt‘ and ‗enacted‘ aspects of stigma (Scambler, op cit) are more poignant, and the construing of epilepsy as a personal and social deviance reinforced. The medicalisation of epilepsy, with its associated reinforcing effect on felt and enacted stigma, is occurring despite epistemological challenges to the power of medicine and interprofessional competition, the de-medicalisation endeavours of social theorists (Illich, 1975; Lewis, 2006), disability activists (Lewis,2006), and a growing number of medical practitioners (Smith and Moynihan, 2002). There is also a burgeoning popular uprising against healthism (Appleyard, 1994: Loefler, 2005; Freedom Activist Network, 2009). Indeed, the medicalisation of epilepsy has been enhanced significantly by scientific neopositivism (which has significant application to neurobiology), the work of WHO, and promedical campaigning of epileptic support agencies. Moreover, contemporary understandings of the ‗psycho-social‘ correlates of epilepsy may contrarily fuel stigma. Adopting a ‗realist‘ position, I argue provocatively that, not with-standing the recognised personal and social penalties of medicalisation the medical conceptualisation of epilepsy is appropriate. There is, I suggest a paradox concerning medical stigma (one of many applicable to epilepsy): overall the advantages of a medicalised (global) society far outweigh the disadvantages, and although for some aspects of human performance medicalisation is inappropriate epilepsy is not one. Taking a lead from Graham Scambler (2009), I suggest that the stigmatisation of epilepsy should be tackled actively both at the interpersonal and structural levels through a collusion between the profession of medicine and its otherwise antagonists from social science and disability activism. Furthermore, such conjoint activism could not only moderate the overmedicalisation of global society, but can form an element of the moral responsibility professionals and academics involved in all areas of health/medical and social care have to improve global society (Morrall, 2009).

1. Myth, Medicine and Madness Over thousands of years and across many different cultures epileptics have either been demonised or deified. But, whenever epilepsy was construed as possession by the devil or as a gift from God medical opinions about epilepsy, whilst not always authoritative, were always available. That is, the apparent incompatibility of myth and medicine did not thwart their coexistence (Eadie and Bladin, 2001). Moreover, not only does epileptic mythology remain, despite the dominance of medicine, but the medical profession proliferated myth through the psychiatric consideration of epilepsy as a form of madness in its own right or as a condition associated with madness. That is, the myth-makers and the mad-doctors inadvertently and to differing degrees colluded in the perpetuation of epilepsy as a social deviance. For the mythmaker epilepsy is always wholly strange and fearful. For the medical practitioner epilepsy was historically also largely strange and fearful, and contemporary medicine retains either by default or deliberately an element of these pejorative perceptions. Indeed medicine has and does spin many myths in its medicalising manoeuvrings. Hippocrates (375BC-460BC) is perceived as the ‗father of medicine‘ (or at least one of its influential ancestors) because of his successful campaign to delineate the discipline from religion and ally it to both philosophy and natural explanations. Hippocrates considered the

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environment, diet, lifestyle, and heredity important factors in the creation of disease rather than any supernatural creator - whether god or devil. In this vein he was to write specifically about epilepsy. Hippocrates in his book titled ‗On the Sacred Disease‘ (as epilepsy was then known) emphatically renounces epilepsy as a blessing or curse from extraneous sources, and instead he identifies it as a disorder of the brain. Moreover, the natural cause of epilepsy was for Hippocrates indicative of natural causation to be found in other madnesses (Porter, 2002). However, Hippocrates was merely indulging in an intellectual stab in the dark (albeit one based on actual observations, and that two thousand years later he was found to be in essence correct), and was not provable. Moreover, his overarching medical theory was that of ‗humorism‘, which has no basis in modern human physiology. So Hippocrates substituted the myth of divinity or devilry with the medical myth that an imbalance in the body of blood, black bile, yellow bile, or phlegm triggered illness. In the case of epilepsy it was the latter humor that was responsible: [Epilepsy] appears to me to be nowise more divine nor more sacred than other diseases, but has a natural cause from the originates like other affections. Men regard its nature and cause as divine from ignorance and wonder……. But the brain is the cause of this affection, as it is of other very great diseases…….. This malady, then, affects phlegmatic people…… (Hippocrates, 400 BC)

So, rudimentary medical understanding of epilepsy such as that proposed by Hippocrates co-existed in ancient Greece alongside myths or encapsulated myth. The perpetuation of myth, during both ancient Greek and Roman civilisations engendered attitudes of dread, disgust, and fear of contagion, or awe and reverence depending on whether suffering from seizures was associated with the gods or devils. The installation of Christian beliefs during Roman times added to the myth making. According to biblical writings, both Jesus and his disciples viewed epilepsy as indicative of the work of demons. Consequently, epilepsy had to be ‗cast out‘. Christian exorcism of epilepsy aimed to cleanse the spirit and soul of the sufferer of an ‗unclean spirit‘ (Graff, 2001). Ancient Greeks (and Romans) and the early Christians, however, intermittently connect, conflate or confuse epilepsy with madness. Even Hippocrates considers the myths surrounding epilepsy to be generated in part understandably because ―it is not at all like to other diseases‖ (op cit). Moreover, both ancient Greek and Roman physicians regarded the moon as having a role in causing lunacy and seizures. The middle-ages with its heightened supernatural beliefs concerning many, if not most aspects of life and death affected epilepsy significantly. People with epilepsy were more and more seen to be possessed possibly with witchcraft. Two Dominican friars (James Sprenger and Henry Kramer) wrote in the late 15th century a handbook on witch-hunting. The Malleus Maleficarum (Hammer of Witches) was sanctioned by the Papacy, and therefore became a very helpful guide for the perpetrators of the medieval religious inquisitions for over three hundred years, offering a legalistic manual on how to detect, prosecute, and execute witches. This handbook is still in production (presumably its recommendations are no longer acted on). Some of the hundreds of thousands (possibly one million) of the women who were killed

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for alleged witchcraft were convicted on the basis that they had seizures or induced them in others. Medical input into understanding disease did not disappear during the height of medieval superstition. Epilepsy continued to be of interest to physicians but it was (again wrongly) assumed to be an infectious disease. This causative explanation was prominent in the thinking of physicians and civic leaders who had to deal with such rampant diseases as tuberculosis and bubonic plague which - whatever their actual transmission route - presented as infectious. By the time the European Age of Enlightenment took hold as a philosophical and cultural movement in the 18th century (its antecedents arising as far back as the 16th century), the dominant belief about epilepsy was that of a physical disorder with a physical cause. But supernatural ideas continued to coincide with natural explanations, as did the association of epilepsy with madness (both regarded - along with masturbation - as under the influence of the moon). The eminent French psychiatrist Jean-Etienne Dominique Esquirol (1772-1840) published in 1838 what medical historian Roy Porter (2002) regards as the most influential psychiatric text of its age, Des Maladies Mentales. This was the first systematic listing of mental disorder in which Esquirol also methodically linked pathological organic causes to psycho-social triggers. Esquirol advocated the asylum as a form of medical treatment, and advocated psychiatry as a medical specialism. The mass incarceration of the mad in the 19th century (Scull‘s asylumdom), allowed psychiatry to flourish as an authentic medical speciality. Esquirol campaigned to have asylumdom spread throughout France, having set-up his own private madhouse in Paris at the onset of the 19th century. Psychiatrists were to become chief administrators of the asylums and medical ideas and interventions the authoritative mode of dealing with the mad. As the asylum became the preliminary treatment for those considered seriously mad (or seriously annoying to their family or community), psychiatry had perfected the teleological validation for its dominance in the madness arena. This is a strategy which has regularly assisted its occupational advancement (Morrall, 2000: 2009). Asylums offered medical practitioners a captive clientele on whom their specialist techniques (which were in the main physical interventions) to be indulged thereby compounding the medicalisation of madness. Esquirol was also convinced of a link between madness and epilepsy, and consequently epilepsy was medicalised similarly to that of melancholia (depression), general paralysis of the insane (tertiary syphilis), and dementia praecox (schizophrenia). But fears of epileptic contagion had entered the asylums. The myth that it might be caught by other (mad) inmates resulted in a policy of internal segregation. Such attitudes, along with more altruistic justifications, contributed to the setting-up of separate institutions for people with epilepsy in Europe and North America towards the end of the 19th century and into the 20th century - the epileptic colonies.

2. Medical Colonisation Asylumdom was not propagated merely to exclude and control let alone punish or enact cruelty. These institutions cost huge amounts of money to build and operate, money donated from local and national sources. They did provide rudimentary care and remedies when no

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other assistance or treatment from any other source (for example, the church) was either forthcoming or, if available, then any more effective than those delivered by the doctors in their asylums. Moreover, the psychiatrists and their assistants (who in the early days of asylumdon were not much more than a disreputable band of gaolers but were to evolve eventually into the regulated occupation of ‗mental‘ nursing) were able to observe their charges and collect massive amounts of data about them. Notwithstanding that the data collected was inevitably shaped by the peculiarities of the social context in which it was generated (as Erving Goffman points out so poignantly in his book ‗Asylums‘, 1961), observing the mad at such close quarters not only gave licence to further medicalisation, but also to compose and classify different kinds of madness. Specifically, Esquirol was able to study epilepsy in detail and this led him to, for example, distinguish between grand mal and petite mal seizures, and to consider epilepsy as a condition which may be associated to madness but deserved an alternative form of asylum (for ‗sane epileptics‘). Meticulous medical monitoring of institutionalised madness therefore has had beneficial consequences which perhaps to a small degree tempers what has become the orthodox social scientific criticism of psychiatry. This criticism is propagated particularly by ‗surveillance‘ theorists (who rely heavily on the work of Michel Foucault) and a disparate band of antipsychiatrists and critical psychiatrists (many of whom, such as Thomas Szasz and Duncan Double who are actually psychiatrists: Szasz, 1971; Double, 2006) who consider psychiatry‘s social control function as wholly negative and/or illegitimate. Theodore Ewart Medical Officer, Colney Hatch Asylum., in his lengthy 1892 article published in the then influential Journal of Mental Science, signifies the medical lobbying at the time by psychiatrists for the creation of separate epileptic institutions. He argues, given that ―the deaf, the blind, the dumb, the crippled, the idiots, the insane, and almost every other unfortunate class‖ (including the poor and the criminal) have had or got their own institutions, then why not the epileptic (Ewart 1892, p.214)? In making his case Ewart draws attention to what he considers as the wretched state of the life of an epileptic in late-Victorian society: [The epileptic has] been left to work out his salvation for himself, often an outcast from his family, thrust out from the schools, shunned by his fellows, refused industrial employment, left to idleness and ignorance, friendless, and drifting at last most likely to the workhouse or insane asylum, they are " not so much born into this world as damned into it. (Ewart, 1892, p.213)

Ewart goes so far as to question whether or not it would be more ethical for ‗civilised‘ society to allow the merciful killing of people with epilepsy rather than allow them to wallow in wretchedness. His mention of a ‗lethal chamber‘ is not a precursor of Nazi extermination camps but a hyperbolic logic aimed at achieving the opposite of what is being suggested, what he describes as an ‗industrial solution‘ to relieve the misery and despair of people with epilepsy. Ewart underscored his argument by positing paternalistically that: [A] good many of these unfortunates are as brightly intelligent, as capable of being educated, as well adapted for industrial pursuits as the ordinary human being.......What they require is industrial training, combined with medical supervision. (Ewart, 1892, p.214)

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So, the epileptic colony (and hundreds were to be founded in Britain and the USA over a period lasting fifty years from about 1890) should, wrote Ewart, be a thriving community, providing homes, education, work, and medical facilities. Just as with the building of the asylums, incarceration was mixed with philanthropy and social exclusion and control, and medical practitioners were able to administrate and experiment. The incarceration of epileptics both in asylums and colonies has to be judged in the context of the conditions which applied to the general population. Karl Marx‘s friend, intellectual and political ally, and financial supporter Frederick Engels wrote a social history of England's working classes in the winter of 1844-1845. In this he described vividly the squalid living conditions of the masses (most of whose existence was either in or on the borderline of extreme impoverishment) residing in the large industrial cities such as Manchester: The manner in which the great multitude of the poor is treated by society today is revolting. They are drawn into large cities where they breathe a poorer atmosphere than in the country; they are relegated to districts which, by reasons of the method of construction, are worse ventilated than any others; they are deprived of all means of cleanliness, of water itself, since pipes are laid only when paid for, and the rivers are so polluted that they are useless for such purposes; they are obliged to throw all offal and garbage, all dirty water, often all disgusting drainage and excrement into the streets….. They are given damp dwellings, cellar dens that are not waterproof from below, or garrets that leak from above….. They are deprived of all enjoyments except that of sexual indulgences and drunkenness, are worked every day to the point of complete exhaustion…. How is it possible, under such conditions, for the lower class to be healthy and long-lived? (Engels, 1892, pp.128-129)

Engels realised that the cause of, or at least a highly significant contributory factor for, soaring morbidity and mortality amongst working people (especially from infectious diseases, malnutrition, and accidents) was their dire social environment. The social backdrop, therefore for most people with epilepsy was as Engels described or worse. Their stigmatisation propelled them into social decline and kept them within what would be termed today the underclass (the long-term unemployed, criminal recidivists, and homeless). Some, perhaps, many of the medical supporters and overseers of the epileptic colonies did genuinely aspire to provide a decent refuge for people with epilepsy and through education, work, and medical care sincerely wish them to be rehabilitated with skills which would allow them to survive better the social change and turmoil of the time (Lannon, 2002). This was similar to ‗moral therapy‘ which had entered asylumdom via Quaker-run institutions such as The Retreat in York, but eventually was adopted (although not by that name) in most asylums. Moreover, people entered the epileptic colony voluntarily which was not the case generally for entering the madhouse. The colonies, as had the asylums, also offered the opportunity for medical research and the development of medical treatments, some of which has stood the test of time. For example, John Hughlings-Jackson (1835-1911) was party to the establishment of industrial and agricultural colonies through charitable organisations (Sander, Barclay and Shorvon, 1993). His work on epilepsy was crucial to the further development of medical (neurological) appreciation of epilepsy and in separating it from madness (Eadie and Bladin, 2001). He was

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to describe various forms of consciousness (for example, what he termed the ‗dreamy state‘) other than complete unconsciousness associated with the major seizures which until then had been the main indicators of epilepsy. The ‗dreamy state‘ is now diagnosed as medial temporal epilepsy. Moreover, according to neurologists Edward Hogan and Kitti Kaiboriboon (2003 writing in the American Journal of Psychiatry), Hughlings-Jackson may also have influenced Sigmund Freud‘s work on the sub-conscious and hysteria, thereby pointing to another crossover between madness and epilepsy (Morrell and Flynn, 2003). As Hogan and Kaiboriboon reveal, across the centuries there has been an intersection of scientific and non-scientific thinking about epilepsy and madness. Certainly, Esquirol had influenced Jean-Martin Charcot (1825-1993) because the latter studied under the former. Charcot is not only considered the founding father of neurology, but his work on hysteria and hypnosis was continued by Freud (the latter was a student of the former). Charcot led research distinguishing ‗hysterical‘ seizures (classified by him and Freud as a neurotic mental disorder) from organic seizures (epilepsy). The epileptic colonies and medicalisation of epilepsy did not remove stigma, however. As Susan Lannon (2002) records, epileptics were still feared as potentially violent and views on contagion hardly diminished given that the authorities had seen fit to incarcerate them. Moreover, the incarceration of any social group inevitably implies difference and or danger.

3. Epileptic Ironies Thomas Szasz, is an unlikely theorist to draw upon in any discussion on epilepsy. For half-a-century Szasz has championed a zealous libertarian brand of ‗anti-psychiatry‘. The original anti-psychiatry movement occurred during the 1960-1970s and included Szasz, the phenomenological-existentialist Ronald Laing (1965) and Marxist-existentialist David Cooper (1967). More recent additions to these early movement is the ‗Critical Psychiatry Network‘ (whose members are not completely against psychiatry but want more emphasis on social medicine rather than on physical methods of treatment particularly its psychopharmacological proclivity) and the ‗Antipsychiatry Coalition‘ (which incorporates medical practitioners, psychologists, and ‗psychiatric survivors‘ who are wholly against psychiatry or against its social control function). Anti-psychiatry of any hue has not and does not usually encompass any specific interest in epilepsy. However, Szasz uses epilepsy as a cause célèbre in his polemic against psychiatry‘s dedication to mind-medicalisation. Szasz's well-rehearsed and persistent argument is that medical practitioners have no legitimate healing role in matters of the mind unless there is a definite organic dysfunction. Most so-called illnesses of the mind are myths, he argues, because they have no organic causation or cure (Szasz, 1972, 1994). Delusions, hallucinations, depression, anxiety, mania, and psychopathy, no-matter that these elements of human performance are categorised as psychiatric syndromes and conditions, are merely, says Szasz, ‗problems of living‘. As such, if a remedy is required at all (problems of living may require solutions or simply endure as part of ordinary human existence), then self-help or the help of family and friends acting as ‗barefoot therapists‘ should be the norm (Morrall, 2008). Only in extremis should the

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intervention of professional helpers such as psychotherapists, counsellors, and lawyers be called upon, and not medical practitioners. When professionals are used, persists Szasz, it must be as a private contract between the individual in need of help and the paid helper. When medical practitioners engage with problems of living, especially if they are utilising mental health legislation, they are acting as agents of social control rather than as agents of medicine and using coercion as a cure (Szasz, 1993, 2007). Szasz considers psychiatry as instrumental in stigmatising epilepsy, replacing the mythology of religion and folk-devilry with that of mind-medicine. The psychiatric gaze conjures-up madness to explain epilepsy because psychiatrists see what they are trained to see. Sir Henry Maudsley (1835-1918), usually thought as an exceptionally progressive psychiatrist and one of the founding fathers of modern psychiatry (whose eponymously named institution in London continues to be associated with progressive psychiatry), is singled out for particular admonition by Szasz, who accuses him of not only commencing the psychiatric stigmatisation of epilepsy but the psychiatric persecution of people with epilepsy. This persecution manifested through Maudsley‘s invention of the medical category ‗epileptic neurosis‘, and in doing so he ―cast the epileptic in the role of Frankensteinian monster‖ (Szasz, p.118) and emphatically realigned the epileptic with the mad. Maudsley, in his and Robert Wosniak‘s text ‗Body and Mind‘ claimed that ‗insane neurosis‘ is ‗closely allied to ‗epileptic neurosis‘, and posited that the former in a parent can lead to the inheritance of the latter in his/her offspring. Maudsley considered that both are ―apt to burst out in a convulsive explosion of violence‖ (Maudsley, 1870, p.71), and that some of those considered dangerously insane, who because of what was offered in defence of their involuntary actions described at this time as ‗homicidal impulses‘ may go as far as murder (Morrall, 2000), experience ‗epileptic convulsions‘ or ‗epileptic auras‘. For Maudsley, the long-term if not life-long confinement of people with epilepsy in asylums (and eventually within epileptic colonies), was necessary to protect society. What Maudsley had achieved with his so-called progressive psychiatric intervention into epilepsy, says Szasz, was the substituting of religious superstition with clinical superstition and exorcism with incarceration. The Maudsley-initiated prejudice about people with epilepsy being mad and susceptible to ‗homicidal impulses‘ remained in the Western medical literature argues Szasz until the 1940s. Szasz argues that by the 1950s, the irony is that whilst psychiatry had asserted the similarities in madness and epilepsy, neurology was stressing the differences between madness and epilepsy. Szasz accepted that neurological research demonstrated that, unlike most disorders of the mind, epilepsy is undoubtedly aetiologically organic. That is, although mythology still surrounds epilepsy there is a reality underneath the mythology, and that reality is neurological pathology. Szasz moderates his stance that the medical profession should stay away from mythical mind disorders, by accepting the legitimacy of neurology‘s claim over epilepsy but considers any involvement by psychiatry as illegitimate. Neurologists have the knowledge, technologies, and appropriate perspective to diagnose epilepsy and provide relevant treatments. Psychiatrists on the other hand, because of their historical focus on epilepsy as a madness, continued to misrepresent problems of living as mental illness, and in their role as agents of social control, are for Szasz irrelevant at best and at worse counterproductive to epilepsy:

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The neurologist deals with persons suffering from demonstrable brain diseases and eschews coercing them. The psychiatrist deals with persons allegedly suffering from hypothetical (nondemonstrable) brain diseases and clings to his power to impose unwanted interventions on them. (Szsaz, 2007, p.122; emphases in the original)

There is, however, a major hiccough in Szasz‘s reasoning about the irrelevance of psychiatry in this sphere adding another irony to a situation already laden with paradox. Neurologists have recognised that brain surgery on people with epilepsy can actually lead to mental disorder. Much research has been conducted and published connecting the two (for example, Lüders, 2008; Foong and Flugel, 2007; Carran et al., 2003; Malmgrena et al., 2002). More significantly, the influential University College London‘s Institute of Neurology London which partners with the National Hospital for Neurology and Neurosurgery in London, states baldly on its website states that certain serious mental disorders occur more amongst people with epilepsy than in the population over all: Patients with epilepsy are at increased risk of developing psychiatric problems such as mood disorders and psychosis compared to those without epilepsy. We are interested in investigating the underlying mechanisms involved. (University College London Institute of Neurology, 2009).

Furthermore, University College London Institute of Neurology (op. cit.) classifies this form of research under ‗neuropsychiatry‘. The existence of the specialism of neuropsychiatry (along with neuropsychology) enfeebles Szasz‘s position on both epilepsy and psychiatry, and re-affirms epilepsy as a medical condition with connotations of madness. Joseph Martin, Harvard Professor of Neurobiology, acknowledges that the two are heading towards full re-unification and endorses this: Neurology and psychiatry have, for much of the past century, been separated by an artificial wall created by the divergence of their philosophical approaches and research and treatment methods. Scientific advances in recent decades have made it clear that this separation is arbitrary and counterproductive. Neurologic and psychiatric researches are moving closer together in the tools they use, the questions they ask, and the theoretical frameworks they employ. The interests of neurology and psychiatry converge within the framework of modern neuroscience. Further progress in understanding brain diseases and behavior demands fuller collaboration and integration of these fields. Leaders in academic medicine and science must work to break down the barriers between disciplines. (Martin, 2002, p.159)

That neuroscience is established already firmly within psychiatry is evident from, for example, the setting-up of a neuropsychiatry section of Britain‘s Royal College of Psychiatry in 2008. What is more, that section in turn has a working group for epilepsy with a wide ranging brief for any college member ‗with an interest in epilepsy and mental well being‘: The group will work this year on the following four themes:  

Assessing the input of neuropsychiatric services to epilepsy surgery programmes. Defining the role of neuropsychiatric services in the management of people with non-epileptic attack disorder.

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Collaborative research in epilepsy and neuropsychiatric disorders. The interface between learning disability and neuropsychiatry in the management of epilepsy. (Royal College of Psychiatry, 2009)

The stigmatisation of epilepsy is ‗alive and foaming‘ in the 21st century according to Sallie Baxendale and Annette O‘Toole (2007) who conducted a study of attitudes involving thousands of members of the public. They point out that media representation of epilepsy in contemporary society is important because of its pervasiveness. They argue that the prejudices faced by those with epilepsy living in the middle ages persist through misrepresentation on television and in films especially in fictional work. However, Baxendale (2009), a neuropsychologist at the Institute of Neurology University College London, may well have inadvertently reignited the myth of epilepsy‘s association with ‗lunacy‘. Reporting on how nocturnal light and its probable effects on epileptic seizures it would seem she intended to remove mysticism and dispel the erroneous beliefs that continue to surround the condition. However, the Sunday Mail reported the research results thus: Moon‘s phases ARE linked with epilepsy after all: Superstitions about the influence of the moon on the brain, and in particular epilepsy and seizures, have been around for centuries, but according to new research, there may be something in them after all. [Bold and uppercase in original] (Mail on Sunday Reporter, 2009).

Moreover, the National Society for Epilepsy (2009) publishes a direct web-link to the newspaper‘s account of Baxendale‘s research, although the reference they make to the research is accurately, if still journalistic, refers to the original title of the published results as as ‗Seeing the Light? Seizures and Sunlight‘. Mind-medicalisation of epilepsy today is surfacing through the increasing incidence of dual-diagnosis (or ‗comorbidity‘). The conclusion to review of the relevant literature by researchers from the department of neurology at Split University in Croatia, record that ‗patients with epilepsy have a strong prevalence of psychiatric comorbid disorders‘, especially depression and anxiety (Titlic et al., 2009). There is even collusion between neurology and social science in the manufacture of merging madness with epilepsy. Professor Ann Jacoby is a medical sociologist and renowned for her research into the quality of life of people with epilepsy and in particular the effects of stigma (Jacoby et al., 2007; Jacoby, 2002; Baker and Jacoby, 2001). Jacoby unambiguously corroborates the neurological stance on epilepsy: Epilepsy is the world‘s most common serious neurological disorder…‖ (Jacoby, 2002, p.10)

She and Bruce Hermann in a recent study (Hermann and Jacoby, 2009), again emphasise the interplay of body (seizures) and mind (cognitive impairment). But in this neurologysociology collusion the body-mind connection is emphasised further because the researchers raise the issue of ‗social dysfuntion‘ (which Jacoby had done in previous research) and posit that neurobiological factors probably contribute to psychosocial problems significantly and in

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any case these factors occur within a social context, and that epilepsy therefore may require an integrated ‗bio-psycho-social‘ approach. Consequently, the medical (and medical sociological on this occasion) intrusion into the everyday life of the epileptic is all-embracing. No aspect of the individual‘s existence can be hidden from the clinical gaze. It could be argued that the ‗social‘ aspect of epilepsy has already been well explored and is not the province of the profession of medicine. Jaya Pinikahana and Christine Walker (2010) adopt as the title of a book, the term ‗social epileptology‘ to describe sociologicallyinformed complementary and counter positions to unadulterated medicalisation. But the integrated model of treatment is recommended by medical practitioners, and because the causative direction is suggested to be essentially from biology towards the social (via the psychological), then medical practitioners are likely to take the lead in delivering and managing packages of comprehensive ‗treatment‘. The latter has precedence in the field of psychiatry where bio-psycho-social explanations of, and remedies for, madness, have a long history. But whilst David Pilgrim, in his review of the model, accepts it has academic, moral, and pragmatic value, he acknowledges it has itself become dislodged by what it was attempting to amend if not replace: It [bio-psycho-social psychiatry] offers practical and professional advantages for clinical psychiatry and humanistic advantages to mental health service users. The model is supported by the acclaimed intellectual resource of general systems theory. Despite these scientific and ethical virtues, to date its promise has not been properly realised. It seems to have been pushed into the shadows by a return to medicine and the reascendancy of a biomedical model. (Pilgrim, 202, p.593)

So it seems that well into the 21st century the linkage of epilepsy with madness is not disappearing but is being confirmed, and the confirmation is now bestowed by what Szasz regards as a legitimate arm of the profession of medicine rather than by those medical practitioners he appears to consider no better than quacks and snake-oil peddlers. Moreover, madness and murder continue with their correlative associations: Two recent cases from opposing spectrums of globalised society (Zimbabwe - an underdeveloped country and Canada – a developed country) illustrate this point: Zimbabwe: High court Acquits Epileptic of murder.....A MUTOKO woman who used an axe to kill a neighbour she accused of having an affair with her boyfriend and then secretly buried the body, has been acquitted of murder after the High Court found she was epileptic and could not be held responsible for her actions.... [She] was saved by her mental status which was confirmed by Government medical doctors. (The Herald, 21st October 2009) Nun's killer not guilty due to insanity....... A man who killed an 80-year-old nun in 2007 has been found not guilty of the murder by reason of insanity. Martin Rondeau, 33, killed Sister Estelle Lauzon, a member of the Catholic order of the Sisters of Providence, in August 2007 while he was being cared for by nuns at a Montreal convent....... During a hearing before Quebec Superior Court Justice Guy Cournoyer yesterday, it was revealed Mr. Rondeau has epilepsy and was in a state of disassociation when he killed Sister Lauzon. (National Post, 2010).

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So, epilepsy has been and still is used successfully as a defence against a murder charge or to support release from a custodial murder sentence (rarely in England and Wales were ‗not guilty by reason of insanity‘ is used as the defence: Reuber and Ronnie, 2007). In such cases ‗punishment‘, if ascribed at all, is likely to be incarceration in an asylum rather a prison thereby invoking mental health law rather than criminal law. This outcome may be more desirable from the killer‘s perspective but not perhaps for the reputation of those with epilepsy. To be judged insane and therefore not responsible for one‘s actions rather than sane and responsible reveals again the contrariness of the condition‘s connection with the profession of medicine: medicalisation both liberates and penalises. What Szasz also underplays in his separation of neurology from psychiatry is that epilepsy is today not only recognised by neurology as an organic problem but also a problem of living. Much of late has been researched and commented on about the psycho-social effects of epilepsy by eminent neurologists. For example, Bruce P. Hermann is Professor of Neurology, at University of Wisconsin School of Medicine and Public Health, and Director of the Charles Matthews Neuropsychology Lab in the Department of Neurology. He has also been a Board Director and is currently a member of the American Epilepsy Society, and Chair of Chair, Epilepsy Foundation Professional Advisory Board. Interesting, and perhaps coincidentally, Hermann has a credible research record in the field of Alzheimer‘s disease which is included in the Diagnostic and Statistical Manual of Mental Disorders (version IV) of the American Psychiatric Association. So, contemporary neurologists having successfully medicalised the body of the epileptic sufferer (specifically, his/her cerebral cortex), are inadvertently re-emphasising the medicalisation of the mind. By default therefore they are acting not just with psychiatrists but as psychiatrists. It was after all a (German) psychiatrist, Hans Berger, who developed in 1924 the first non-invasive and much used technology to assist in the neurological diagnosis of epilepsy the electroencephalogram (EEG). Furthermore, modern psychiatry isn‘t as separate from neurology as Szasz implies. Neuropsychiatry (together by neuro-psychology) is alive, well, and burgeoning. This is what the profession of medicine excels at: adopting an occupational strategy of inclusion and expansion whenever there is threat to its dominance. Adaptability is the history of the profession‘s success in the occupational hierarchy and in its colonisation of everyday life which has enabled it to medicalise the body and mind (Morrall, 2009). What Szasz persistently misses in his critique of psychiatry is that because psychiatry is part of the profession of medicine it adopts or is enveloped by the strategies of the profession. Notwithstanding his naiveté with regard to the power of psychiatry (and undoubtedly Szasz has made an important contribution to analysing the social role of psychiatry), Szasz has offered another intriguing irony with regard to epilepsy and psychiatry. Epileptic seizures have been and still are regarded as indicative of madness by the profession of medicine (historically the seizure was the only symptom necessary for a diagnosis of epilepsy and today it remains the pre-eminent symbol of the disorder) whilst epileptic seizures have been and still are used by psychiatry as a treatment for madness. Approximately one million people globally receive electroconvulsive therapy (ECT) each year principally for depression (Dukakis and Tyre, 2007). But, Szasz does not observe his own paradoxical position regarding psychiatry and neurology. That is, ECT (along with psycho-pharmaceuticals) is at the interface of the two disciplines, bringing them and the relationship between the mind and the body (brain) together. ECT epitomises physical

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psychiatric treatments and the apparent success of physical methods of treatment in such conditions as depression and schizophrenia are regularly offered as evidence that madness (or at least depression) has an organic root. But from Hippocrates to Esquirol the medicalisation of madness has always incorporated both mind and body. The search for physical, scientific, and ‗natural‘ causation has been perpetually the major focus of psychiatric investigation, and has had notable successes (dementia, general paralysis of the insane, drug-induced psychoses) with the holy grail of biomedical accomplishment always in offing (that is, the genetic foundation of schizophrenia is promised repeatedly. Although psychological understandings and interventions are obviously used by psychiatrists and by members of associated disciplines (clinical psychology, psychotherapy), physical approaches govern the psychiatric lexicon of treatments (drugs in particular, but also psychosurgery, and ECT). Neurology and psychiatry may periodically diverge over the locus of their respective research interests (and there are many divergences within both disciplines) but collude in the use of diagnostic technology and prospective physical treatments (whether genetic or brain structural pathology). Szasz, therefore, can‘t have it both ways. If the medical profession‘s raison d'être is to minister to only organicallybased disease then psychiatry seems to be trying its very best to do just that, a mission that has attracted much criticism from quarters other that of Szasz and his acolytes. Furthermore, such collusion and interconnection demonstrates and underscores mindbody medicalisation. The danger in attempting to de-stigmatise epilepsy through de- medicalisation is one of ‗throwing the baby out with the bathwater‘. Demedicalising epilepsy in order to destigmatise epilepsy could allow those old and presently backstage stigmata ‗demon‘ and ‗deity‘ to return to the forestage.

Conclusion Jacoby states that, ―Historically, epilepsy has been a stigimatizing medical disorder par excellence‖ (Jacoby, 2002, p.10). I argue that epilepsy has also been a par excellence example of ‗mind-body‘ medicalisation, and one in which ‗managed stigma‘ may well be a price worth paying. Ironically, given her laudable attempts to de-stigmatise epilepsy, Jacoby (op. cit.), presumably inadvertently, acknowledges this contrary proposition when she observes that even in the developed word stigma remains ‗real and serious‘ because non-medical beliefs persist. She then goes on to imply that globalised medical intervention is recommended: Epilepsy is now firmly established as a neurological condition, and large-scale epidemiological studies have allowed for a much more favorable view of its prognosis than was formerly held. [Emphases added]. (Jacoby, 2002, p.14)

Sociologists Joseph Schneider and Peter Conrad (1980) in their seminal study of epilepsy and stigma revealed that the main problem for many people with epilepsy is not that it is perceived as a serious the medical condition but that social stigma ensues because of the label. Stigma hence is both interpersonal (for example, verbal and non-verbal insults) and institutional for example discrimination with regard to employment and driving). However,

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Schneider and Peter Conrad suggest that people with epilepsy learn to accept it as merely another facet of their lives. Hence, intrapersonally stigma is not merely reacted to passively but actively. Such management of stigma is both hindered and helped by the furthering of mind-body medicalisation. Medical interventions have undoubtedly iatrogenic consequences. .....and many aspects of human performance are subsumed unnecessarily by the medical discourse to the point whereby all emotions, behaviours and thoughts may be questioned for their normalcy of pathology: pregnancy; menstruation; pre- menstrual tension; fatness; thinness; baldness; height; misery/unhappiness; anxiety/stress; irritability; laziness; over-activeness; alcoholintake; naughtiness in children; deformity/blemishes; penis size; vagina elasticity (Conrad, 2007). Moreover, Susie Orbach (2009) and Conrad (op. cit.) fearful that genetic therapy is leading to a ‗culturally-constructed ideal‘ and that the healthy are thereby considered ‗good citizens‘ and the unhealthy ‗bad citizens‘. The medical profession is not unaware of the negative by-product from excessive medical interference with everyday life. For example, the Journal Public Library of Science Medicine (2006) published eleven articles by USA and British medical experts on the subject (Fletcher, 2008). Richard Smith (2002), editor of the British Medical Journal, along with journalist Ray Moynihan recommend (Smith and Moynihan, 2002), recommend that all medical students should read Illich‘s treatise on medicalisation as part of their training to be doctors. Imre Loefler, former professor of surgery and medical educationalist based in Africa, writing in the British Medical Journal, links healthism to eugenics: Versions of healthism have surfaced before. Two examples are Sparta and the Third Reich, both of which practised genetic selection. In Sparta, if an infant was considered to be defective it was discarded—taken to Taygetos, the mountain where hyenas lurked. Under Hitler, genetic selection was administered at many levels and according to multiple criteria: race, mental disease, congenital anomalies, and criminal tendencies. Contemporary healthism employs eugenic manipulations of the Spartan kind, except that, thanks to sonography and tissue sampling, the selection and the discarding do not have to wait until birth. Prenatal genetic selection has become an important branch of health care—the term eugenics is eschewed because of Hitler. (Loefler, 2005, p.441).

Loefler argues that healthism is anti-liberal, anti-choice, anti-risk, and, ultimately, antihumane. The proposition of the healthiest advocates is that a healthy society is one in which people are not allowed to eat, drink, and smoke, whatever they want. Nor are they allowed to produce children with a faulty genetic makeup (such as epilepsy). However, in the West medical practitioners have contributed to a diminution of infant mortality, maternal mortality, the eradication and containment of a range of killer diseases, and assisted in the prolonging of life beyond that which remains all too short in so many nonmedicalised under-developed societies. Socio-economic intervention has been far more successful in lowering the death rate from disease and prolonging life, but medical science is not only demonstrably successful in dealing with a wide range of specific maladies but provides a forestalling of death and as well a less painful dying. Furthermore, there is a realist argument for a reappraisal of over-indulgent medicalisation and healthism in the former part of world and a reappraisal about under-indulgent medicalisation and healthism in the latter part. Millions of people die from preventable and curable diseases because of unavailability

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of (culturally-sensitive) medical input. People in rich countries may suffer from iatrogenesis (along with diseases related to richness – especially coronaries and strokes). But people in poor countries are dying from diseases that have already been eradicated or inhibited, or do not exist in rich countries (such as malaria, tuberculosis, HIV/AIDs, and Ebola), and hundreds of thousands continue to suffer unnecessarily from disorders that can be alleviated (such as epilepsy). There is, I suggest, therefore a need for a realist approach to medical intervention with epilepsy (as with most if not all other diseases and disorders). As with the schizophrenic who may have been tethered to a stake or burned as a witch in superstitious medieval times but in a contemporary (medicalised) society is offered by comparison a humane treatment, so the epileptic‘s ancient association with either deity or devilry has been replaced substantially by relatively beneficial medical interventions. Hence, I propose (ironically perhaps) that the task for medical, health, and social care professionals, and social scientists is not to engage in the deconstruction and destruction of medicalisation but to collude constructively for the building of a better society.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter X

Crossing Continents: Meanings and Management of Epilepsy among People of Pakistani Origin Living in the UK Penny Rhodes 1 and Neil Small 2

1. Bradford Institute for Health Research, Bradford Teaching Hospitals NHS Trust, United Kingdom 2. School of Health Studies, University of Bradford, United Kingdom

Abstract This chapter considers responses to epilepsy in members of the Pakistani community living in Bradford, a city in the north of England. A complex picture is presented of allegiance to the epistemology of Western medicine and adherence to its medication, while at the same time there is widespread use of folk and religious remedies. People live with a plurality of health beliefs and undertake practices that are apparently contradictory. Belief in therapeutic efficacy is only one element in the intricate mix of factors which influenced a person‘s use of a particular therapy. Other influences include family and community pressures, opportunity and cost. Over-riding all these are the uncertainty and sense of desperation experienced when conventional biomedicine fails to effect either a cure or adequate control of seizures. Considering beliefs about epilepsy and examining choices about care allows us to explore how the interaction of structural factors and individual preferences in making choices is influenced by the existence of differing health systems and beliefs. The resulting hybrid experience, we argue, is likely to be a characteristic of migrant communities worldwide.  Correspondence: Dr Penny Rhodes, Bradford Institute for Health Research, Temple Bank, Bradford Royal Infirmary, Duckworth Lane, Bradford, UK. E-mail: [email protected]. Tel. +44 (0)1274 364474.

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Introduction With the notable exception of Fadiman's (1997) account of one Hmong family's tragic clash with the United States medical service, little attention has been paid to the responses to epilepsy experienced by members of immigrant groups who have moved from one cultural context, set of socio-economic circumstances and health care system to another. To what extent are the old ways supplanted by the new or adapted to accommodate conditions prevalent in the new social context? Where traditional beliefs and practices are retained, do they persist in parallel with those of the new country or do they become intermingled and integrated? To what extent are traditional approaches used in preference to the health care services of the new country and what are the factors which determine the use of one approach in preference to another? These were questions addressed in a qualitative study of the experiences and understandings of epilepsy amongst the Muslim population of Pakistani origin in Bradford, a city in the north of England, and it is likely that many of the findings will be relevant to other immigrant groups. For details about population characteristics see Figure 1. We have reported on the background and methodology of this study (Ismail et al., 2003) and have examined in detail the way beliefs, including religious beliefs, may influence choice of treatment (Ismail et al., 2005a; 2005b). Our study prompted us to develop a model of cultural hybridity where an individual might seek help from sources which operated with different epistemologies or systems of meaning, those of faith-based traditional healing and of science. Sometimes these different sources of help were accessed simultaneously and sometimes sequentially. Our sense was that these choices were made consciously and that their motivation was often linked not so much to seeking the most effective response but to pleasing family members who encouraged access to popular and folk remedies for epilepsy (Small et al., 2005). In this chapter, we will take these insights from our study further by concentrating on the way decisions are made about accessing different treatments and about the meanings attributed to the resulting choices. This is an agenda that allows us to utilise a sociological literature concerning the way material practices are integrated into complex systems of meaning. Characteristics of Bradford‘s South Asian population The South Asian population in this city consists primarily of people of Pakistani origin. The 2001 census identified 14.4% of the city's population as Pakistani, 2.7% Indian and 1.1% Bangladeshi. Many in the Pakistani community moved from the mainly rural Mirpur region of Azad Jammu Kashmir. The first significant cohort to arrive came in the late 1950‘s and 1960‘s to work in the city's textile mills. Men arrived first, with their wives and then other family members following later. The population is now long established with second and third generations being born in the UK. There is also a continuing inflow (and outflow). People come to the UK to marry and to reconfigure extended families in this country. Outflow is most often for limited periods of residence in Pakistan. Family and village ties are sustained through regular travel in both directions. Figure 1.

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Everyday Practices and Complex Systems Throughout its history, sociology has sought to engage with the question of how particular ways of behaving become a routine part of everyday life for the individual and, at a social level, how they become customary practice. There are two main ways of considering these issues, one begins with the social – how social forces shape the actions of individuals – the second underlines the importance of individual agency and considers that the antecedents and consequences of individual choice should be the starting point for analysis. Those concerned with social forces have developed a focus on institutionalization (e.g. Parsons, 1951). Others have looked at the production of shared behaviours (e.g. Fleck, 1979,1935) or the ways in which the exercise of power produces ―subjects‖ who then see the options they have in ways defined for them, not chosen by them (e.g. Foucault, 1965). On the other hand, those who start with the individual have concentrated on identifying purposes and intentions and exploring the relationship these have with actions in particular social contexts. Here sociology sits close to psychology in exploring Rational Choice Theory (Goldthorpe, 1998) or Theories of Planned Behaviour (Ajzen, 1991). The most recent contribution to the debate has been the development of ―Normalization Process Theory‖ (May and Finch, 2009) which draws on both approaches in describing how practices become embedded as routine in everyday life and how these are then integrated in social contexts. ‗Although it is undoubtedly the case that actors do have preferences and intentions that they seek to express, there are always social factors that promote or constrain particular expressions of agency‘ (May and Finch, 2009: 538). We will consider how individuals with epilepsy in our Bradford based Pakistani community express their understandings and shape their management of epilepsy by considering the interaction of the social with individual agency. Here the social includes both institutions and shared belief systems. What options does the person with epilepsy have when seeking support? When deciding on these options, what belief systems are being invoked? And how does the individual shape what is right for them? In the case of the Bradford population, there is an added dimension and that is the existence of parallel systems of healthcare with two legitimating authorities, two social networks and separate systems of meaning. In this chapter, we contribute to the debate on the relative impact of structure and individual agency on social practice and on how particular choices become normalized. Specifically, we consider how choices about health care are exercised in a social context of parallel services and belief systems and argue that individuals can be seen as knowingly constructing hybrid arrangements, taking from different systems in ways that meet a variety of needs.

The Social Dimension Parallel Systems of Health Care Epilepsy, in the UK, is generally interpreted within a medical frame of reference and is understood to have a physical basis, although in most cases the precise origins and causes of seizures are unknown. Treatment, mainly in the form of anti-epileptic drugs, is provided

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without charge by the National Health Service (NHS) and is accessed both at the primary care level, through general practitioners (GPs), and secondary and tertiary levels, through specialist neurologists. By contrast, in Pakistan, epilepsy is variously interpreted within folk, religious and medical paradigms. It is popularly categorised as a mental disorder and faith healers are a major source of care for people with mental disorders, including epilepsy (Khan et al., 2004; Saeed et al., 2000). Even among physicians, the distinction between epilepsy as a medical and a strictly psychological disorder is fluid (Khan et al., 2004: 584). There is some evidence of belief in supernatural causes, although some studies (Aziz et al., 1997; Khan et al., 2004) suggest that only a minority of people hold to such beliefs. Health care provision is heavily tilted towards the private sector, which serves nearly 70% of the population and covers the range from trained allopathic physicians to traditional faith healers. The private sector operates primarily as a fee-for-service system and is largely unregulated (Ghaffar et al., 2000). This pattern of provision is partially replicated at the local level within the city of Bradford. Thus, in parallel with, and largely invisible to the city‘s community-based NHS epilepsy service with a patient list of around 3000 (Wright et al., 2000), is a well-established network of traditional South Asian approaches to health care which extends to other towns and cities where there are significant concentrations of people of South Asian origin. This network has close links with Pakistan and the Indian sub-continent, sustained via three routes: 1. Traditional therapists are consulted and traditional remedies accessed when UK residents are visiting Pakistan. 2. Celebrated pirs (faith healers) and hakims (herbal practitioners) tour UK providing religious healing. (The practices of faith healers and other traditional South Asian healers have been examined elsewhere (see Small et al., 2005; Saeed et al., 2000; Gardner 1993; Ahmad, 1992) 3. Consultations may be made without the recipient being present, either someone seeks help on their behalf or remedies can be obtained via correspondence: taweez (amulets), for example, can be sent in the post. Amulets, contain verses from the Koran and are usually worn next to the body (around the neck or on the arm) and act as a defence against evil spirits or the evil eye (buri nazaar). Other types of amulets are dipped in water that has been blessed , the water is then drunk. Whereas, in Pakistan, people's choices about the utilization of health services are heavily constrained, with much of the rural population having little or no access to public services, in the UK, the existence of parallel, yet accessible, systems provides people with opportunity for genuine choice. In Pakistan, many people's first recourse is to traditional therapists who charge less for their services than doctors practicing in the allopathic tradition; in the UK, with most NHS services free at the point of delivery, this pattern is reversed (Rhodes et al., 2008a,b). An earlier epidemiological study of epilepsy in the Bradford found that the level of uptake of NHS epilepsy services by people of South Asian origin was lower than expected, given the proportion of this group in the population. There are three possible explanations: first, some people with epilepsy may not be presenting for treatment; second, they may be

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presenting to the NHS but not being appropriately diagnosed; third, for which there is some anecdotal evidence, some people may have been receiving treatment exclusively within the traditional sphere. As we have seen, epilepsy can be interpreted within a spiritual or medical paradigm, and belief in the former may lead some people to consider their condition or that of their relative to fall outside the scope of western medical intervention. However, if people are accessing traditional treatments, we cannot assume it is just because of their appeal. It may also be that they are being pushed towards these services because of shortcomings in the western allopathic approach, either in the way services are made available or in the efficacy of the services when they have been accessed. Few people in Bradford are likely to have been excluded from western medical treatment on the grounds of cost or physical accessibility; nevertheless, some may have found themselves excluded for other reasons. Studies of disability in South Asian communities highlight the central importance of communication to effective health and social care (Ahmad, 2000). Communication difficulties with NHS staff have been widely reported, both in Bradford (Ismail et al., 2005b; Rhodes and Nocon 2003; Rhodes et al., 2003), and elsewhere (Fazil et al., 2002; Bywaters et al., 2003; Mir and Tovey, 2003; Bhakta et al., 2000). A significant proportion of people with epilepsy (and/or their families) are not fluent in spoken English, yet there is only limited use of official interpreters in consultations (Ismail et al., 2005). Even when there are interpreters, problems have been reported. These include differences in education and background between patients and interpreters, which creates challenges in understanding, even within the same language tradition; concerns about confidentiality and impartiality when both patients and interpreters are living within the same community, and about bilingual competence (see. Rhodes and Nocon, 2003; Kaufert et al., 1997; Naish et al.,1994; Plunkett and Quine, 1996). However, better language support is only part of the solution. There is also dissatisfaction with primary care services (Ismail et al., 2003; cf. Rhodes et al., 2003), even though this is the area of service provision where ethnic, religious, cultural and language affinity with service providers would appear to be greatest: many GP‘s in Bradford are from the South Asian community. Poor communication and mistrust between patient and doctor may make it very difficult to take an adequate history and it is likely that some diagnoses of epilepsy may be missed. Further, some people may have been deterred from approaching NHS services altogether.

Beliefs about Epilepsy If we can see why shortcomings in NHS services may promote uptake of traditional remedies, there are also positive reasons why someone may choose to go outside the allopathic system. We may be seeing the attraction of familiar institutions and traditions which have the additional reassurance of offering explanations for epilepsy from within a person‘s belief system. Such explanations can be contrasted with the medical uncertainty that accompanies epilepsy. Traditional treatments include the prospect of a cure, as opposed to control which is the best Western medicine can offer. Evidence from our study interviews and focus groups revealed that in this UK city, as in Pakistan, epilepsy was variously understood within folk, religious and biomedical frames of reference (Small et al. 2005; Rhodes et al., 2008b). However, there was a bifurcation in the

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community between people living with epilepsy themselves and those around them. Beliefs that epilepsy was linked to possession by mischievous spirits (jinn) and the Evil Eye (buri nazaar) were evident within the South Asian community, especially amongst the older generation. People reported that such views were widespread in Pakistan, especially in village communities. It was also widely believed that epilepsy was contagious. Yet few of those with epilepsy themselves expressed such views. Most professed to accept the medical explanation of a physical basis to their condition and concordance with pharmacological treatment was high. However, there was a widespread acknowledgement of the unknowns of epilepsy: its cause, the timing of seizures and the likelihood of any help being effective. In this domain of the unknown, various explanatory systems and action plans could be contemplated.

Making Choices We have seen that parallel systems of health care and varied belief systems are present in both Bradford and in Pakistan. In this section, we will consider how individuals negotiate their individual response within and between them. Most people who had used traditional therapies had simultaneously used conventional anti-epileptic drugs (cf. Tovey et al., 2005), seeing them as a supplement rather than an alternative. In our study, all those who had turned to traditional therapies had experienced continued seizures, despite compliance with medical regimens. Some were persuaded to use them by family or friends, often when visiting Pakistan; others were worried about the longterm effects of using anti-epileptic drugs (cf. Rao, 2006). Younger people, in particular, were often dubious about the safety and efficacy of some traditional treatments but were pressured or persuaded to try them by their families (cf. Saeed et al., 2000), especially on visits to Pakistan (Khan et al., 2004; Tovey et al., 2005). The high levels of use of traditional therapies, despite the scepticism encountered (cf. Khan et al., 2004; Tovey et al., 2005), reflects family pressures from parents and older relatives; it also reflects a pervasive uncertainty: ―We don‘t know what works, so we might as well try this‖; but, most of all, it reflects a desperation felt by people with epilepsy. There are many accounts of this both in academic literature and in the proliferation of personal accounts of life with epilepsy that has been made possible by the ease of posting stories and opinions on the internet. One of the most striking is David Beauchard‘s graphic novel about his brother‘s epilepsy. This chronicles a search for therapies in 1960‘s Paris – via conventional medicine, brain surgery, macrobiotics and spiritualism, a search fuelled by a desperation for at least amelioration and at best cure (David, 2005). Between 30% and 50% of all people with epilepsy in the UK continue to have seizures, despite adherence to AEDs, with profound effects on their quality of life, morbidity and, in some cases, mortality (Dobson, 2004; Duncan et al., 2006). Participants in our study found themselves not only caught between differing interpretations of their condition and differing therapeutic options but having to negotiate meaning and responses at the point where the new purism of an internationalised Islamic reformism interfaced with local folk beliefs and practices carried to England from rural Pakistan (cf. Adib, 2004; Eade, 1997; Gardner, 1993). For some young people, rejection of

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folk explanations and remedies for their epilepsy and concordance with western pharmacological treatments enabled them to distance themselves from the "superstitious" beliefs and practices of their elders and of villagers in rural Pakistan without compromising their essential Muslim identity. Consistent with this epistemology or world view, western medicine is seen as a manifestation of the power of God. Younger people, in particular, were likely to question the role of the pir (faith healer) as an intermediary with God and to question the religio-magical properties of amulets and other talismans. We have been considering how Pakistani people with epilepsy combine western, traditional and folk remedies and have argued that they can combine approaches even when the underlying epistemologies are very different. Such practices go on in the wider community when people seek to use complementary and alternative therapies (Zollman and Vickers, 1999). We found little evidence of the use of non- South Asian complementary and alternative therapies (CAMs) in our sample. Only two people mentioned non-South Asian therapies – Reiki and Chinese medicine (cf. Tovey et al. , 2005; Khan et al., 2004; Rao 2006). Most mainstream or 'globalised' (Tovey et al., 2005) CAMs are not provided by the NHS (Ernst 2000) and it is therefore the more affluent who generally make use of them (Adib 2004; Ernst, 2000). Moreover, it is likely that much of the appeal of traditional South Asian therapies, as opposed to mainstream CAMs, lies in their religious and moral legitimacy within the wider South Asian community, especially for the older generation who were disproportionately influential in the determination of treatment choices (Rhodes et al., 2008b).

Discussion Both the UK and Pakistan have well-established plural systems of health care. However, the balance between biomedical and folk/religious systems and the nature of access to them differ considerably. In rural Pakistan, provision is heavily skewed towards the private sector and healers practising outside the allopathic biomedical tradition (Ghaffar et al., 2000); in the UK, health care provision is dominated by the public sector, through the NHS. In Pakistan, many people are effectively excluded from using biomedical services by cost and accessibility. In the UK, the situation is reversed, with medical services provided free at the point of delivery through the NHS, whereas traditional therapists charge for their services or expect a donation. Evidence from some studies suggests that biomedicine (Tovey et al., 2005; Khan et al., 2004) and its pharmaceutical products (Hunte and Sultana, 1992) are held in high esteem within Pakistan and that the use of traditional approaches is not necessarily linked to perceptions of their greater efficacy (Tovey et al., 2005; Khan et al., 2004). Consequently, the differing patterns of service usage observed between Bradford and Pakistan may reflect less of a change in cultural values than a change in patterns of opportunity. Socioeconomic factors and the politics of poverty may exert at least as great an influence on people's health seeking behaviour and treatment choices as cultural factors, including different belief systems. The enduring popularity in the UK of the traditional practices used by study participants may be linked with the maintenance of a cultural identity which is perceived to be under threat from the practices and values of the country of settlement. However, other

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countervailing forces may have greater influence, especially amongst the younger generation and those who have spent most of their lives in the UK. First, many folk practices have been denounced as dangerous superstition by proponents of the new Islamic reformism (Adib, 2004; Eade, 1997). Second, the continued use of traditional practices by low status groups women, the poor and uneducated (Tovey et al., 2005) - may further weaken their prestige. Third, the influence of traditional remedies in the UK is undermined both by the hegemony of allopathic medicine and the relative cost of these remedies compared with the drugs provided by the NHS. Fourth, although the promotion of allopathic medicine over indigenous practices was initiated by the colonial administration in Pakistan, its continued dominance has been supported by national governments (Ghaffar et al., 2000; cf. Khan, 2006 for a discussion of medical pluralism in India). Like the use of complementary and alternative therapies (CAMs) by the UK population, much of the appeal of traditional South Asian healing stems from an implicit critique of the western medical approach; the provision of more personal and holistic care; and the offer of treatment for long-term conditions which have proved intractable to conventional medical treatment (Ernst 2000; Tandon et al., 2002; Kaptchuk and Eisenberg, 2001; Kelner and Wellman, 1997; Vincent and Furnham, 1996). Some shortcomings in western medical care for epilepsy are recognised within the allopathic paradigm – not least the absence of any cure and the continued seizures experienced by significant numbers, despite adherence to prescribed drug regimes. Further, it is recognised that treatment is not sufficiently patient centred. Individuals with epilepsy ―need sympathetic, well informed professional advisers to integrate the science with a person‘s life and thus generate holistic care plans‖… ―It should be individualised but remains empirical‖ (Duncan et al., 2006: 1097). We have seen how the way services are provided might inhibit people accessing care and may lead to problems in diagnosis. In this context, medical and folk/religious approaches can be seen by people with epilepsy as complementary rather than antagonistic: where allopathic medicine treats the symptoms of epilepsy, traditional and religious approaches engage with causes (Saeed et al., 2000). People in our study have to negotiate their lives amidst conflicting social and spiritual epistemologies. No single model, including the biomedical, incorporates the various worlds of meaning within which epilepsy exists. The person with epilepsy serves as a mediator between individual and collective experiences, and those collective experiences may be contradictory. Any meaningful care has to recognise the cultural resonances of the condition as well as its quotidian presence. Both the fear of seizures and their occurrence fracture both a person's social status and their sense of self.

Conclusion We have discussed understandings of, and attitudes and responses to, epilepsy among members of the Pakistani community living in the city of Bradford in the north of England. A complex picture is presented of allegiance to the epistemology of Western medicine and adherence to its medication, while at the same time there is widespread use of folk and religious remedies. Just as, we argue, our subjects live in a community that crosses two

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continents, so to they live with simultaneously held health beliefs and undertake practices that are apparently contradictory. Such a community and such complexities of belief and practice are characteristic of the worldwide impact of globalization and its production of social and cultural hybridity. Influenced by May and Finch, we have looked at how social structural factors, primarily the availability of the institutions of the national health service and the availability of a web of folk and faith based responses to epilepsy, make possible and promote particular expressions of individual agency and constrain others. The economics of health care have to be considered as well as the status of differing legitimating authorities. We have argued for an understanding of agency as a sort of knowing duplicity – people with epilepsy first choosing allopathic medicine and then adding traditional treatments to please other members of their family. But a key characteristic of epilepsy undermines this idea of knowing agency. Uncertainty can linger in the mind of even the most calculating rationalist. One might imagine the following, ―Western medicine doesn‘t know why I have epilepsy, can‘t cure it and is only partially successful at stopping my seizures. I don‘t believe an amulet dipped in holy water will do any good (except keep my family happy and underline my identification with the traditions of my homeland) but how about if it does, what can I loose.‖ 2 ‗Note 233 in his book 2 Pensees states that even though the existence of God cannot be determined through reason, a person should wager as though God exists, because living life accordingly has everything to gain and nothing to loose (Pascal, 2003: see, Jordan 2006.) There is a similar argument developed, centuries before Pascal, in Islamic thought (see Al-Juywani, 2001).

We have presented beliefs and responses to epilepsy as indicative of parallel systems and have argued for a hybridity that both shapes and reflects the choices people make. But there are other ways of considering how contradictory beliefs relate each to the other. It may be that health beliefs are layered each on the other. That is, a new belief does not eradicate an old, even when the two beliefs appear diametrically opposed. Thus, although a person may profess an allegiance to allopathic medicine, in the event of a seizure, they may not be able to dismiss a sense of their being. possessed. Alternatively, we can deal with competing beliefs by subsuming them in something bigger. It is a characteristic of our Pakistanis with epilepsy that they are able to incorporate different world views in an all-encompassing theocratic view. A belief that there is ―No cure except from Allah, all cures come from Allah‖ allows both western and traditional approaches to be embraced within a culturally comfortable formulation (cf. Saeed et al., 2000).

Acknowledgment This chapter builds on insights gained from a qualitative study funded by the UK charity Epilepsy Action. We are grateful to the people who participated in the study by being interviewed or attending focus groups and those who were members of the project advisory 2 We are borrowing from the approach developed by Pascal in his elaboration of his ―Wager‖.

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group. We would also like to thank our colleagues Hanif Ismail and John Wright who, with us, undertook this study.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter XI

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span Avani C. Modi 1 and Shanna M. Guilfoyle 2

1. Cincinnati Children‘s Hospital Medical Center, Cincinnati, OH, USA 2. Centre for Adherence Promotion and Self Management, Cincinnati Children‘s Hospital Medical Center, Cincinnati, OH, USA

Abstract The primary treatment for patients with epilepsy is the use of antiepileptic drugs (AED). However, the efficacy of AEDs is compromised when patients do not adhere to their treatment regimen, which occurs approximately 50% of the time. Adherence is defined as the extent to which a patient‘s behavior matches agreed upon recommendations from the health care provider (World-Health-Organization, 2003). Poor adherence to AED therapy is an underappreciated, unrecognized, and preventable cause of treatment failure, which can lead to increased morbidity and mortality for patients with epilepsy. In turn, the need to identify targets for interventions that can improve adherence for individuals with epilepsy and subsequently promote better health outcomes is warranted. The goal of this chapter is to review and critically evaluate the current state of adherence research in pediatric and adult epilepsy, including the impact of non-adherence on health outcomes, adherence measurement issues, identification of predictors of adherence, intervention strategies used to promote adherence and directions for future research and clinical care.

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Correspondence: Avani C. Modi, Ph.D., Division of Behavioral Medicine and Clinical Psychology, Center for the Promotion of Adherence and Self Management, Cincinnati Children‘s Hospital Medical Center, 3333 Burnet Avenue (MLC-7039), Cincinnati, OH 45229, (513) 636-4864; fax (513) 803-0415. e-mail: [email protected].

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Introduction Adherence to medical regimens is a significant problem for children and adults with chronic illnesses and their families, with average estimates of only 50% adherence to longterm treatments (Rapoff, 1999). Adherence rates for antiepileptic drug therapy (AED) in pediatric and adult epilepsy are quite variable due to the use of different measurement methods, such as electronic monitoring, serum levels, self-report, and pharmacy records. Poor adherence to AED therapy is associated with increased morbidity (e.g., continued seizures), mortality, healthcare costs, and reduced quality of life for individuals with epilepsy, as well as increased stress and anxiety for caregivers and family members. In fact, non-adherence (versus adherence) was associated with a three-fold increased risk of mortality for adults with epilepsy in a recent study (E. Faught, Duh, Weiner, Guerin, and Cunnington, 2008). Sociodemographic (e.g., age, socioeconomic status), disease (e.g., seizure type), treatment (e.g., once versus twice daily dosing), individual (e.g., internalizing symptoms), family (e.g., family conflict), and health system (e.g., patient-provider communication) factors have been linked to compromised adherence. However, few adherence interventions have been developed, applied, or evaluated in epilepsy targeting modifiable factors to promote optimal disease management. Without empirically-supported interventions in epilepsy, non-adherence will continue to compromise the efficacy of new AEDs and potentially the course of epilepsy itself. This chapter is organized as follows: 1) a brief overview and definition of adherence terminology; 2) delineation of the health and psychosocial consequences of poor adherence across the developmental lifespan; 3) critical evaluation of the measurement methods used to assess adherence in epilepsy; 4) identification of sociodemographic, disease/treatment, psychosocial, and systems-level predictors/correlates of adherence within pediatric and adult epilepsy populations; 5) review of adherence interventions that hold promise for targeting epilepsy non-adherence. We end with a discussion of the steps necessary to advance AED adherence research and clinical care, with the long-term goal of improving the lives of patients with epilepsy.

Defining and Operationalizing Adherence Behaviors Adherence has been considered ―the best documented but least understood health-related behavior‖ (Becker and Maiman, 1975) and is defined as the extent to which the patient‘s behavior matches agreed recommendations from the prescriber (World-Health-Organization, 2003). In contrast, the word compliance, which has often been used interchangeably with adherence, is defined as the extent to which a patient‘s behavior matches the prescriber‘s advice (Haynes, et al., 1976). Providers have begun moving away from the term compliance because it suggests that patients need to obey or acquiesce to instructions provided by their physicians. In contrast, adherence places greater emphasis on the patient‘s active involvement in his/her treatment and the potentially collaborative nature of physician-patient relationships (Leventhal, Safer, and Panagis, 1983) and thus will be used throughout the chapter. It is also

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 177 important to note that newer terms, such as persistence (J. A. Cramer, et al., 2008) and concordance (Rand, 2005), are also gaining wide recognition. There is currently no consistent operationalization of the term ―adherence‖; however, several general conceptualizations can be found in the literature (La Greca and Bearman, 2003). The first method considers adherence as a categorical variable in which specific cutoff scores are used to define groups as ―adherent‖ (e.g., 80% of prescribed medications taken) or ―nonadherent‖ (Phipps and DeCuir-Whalley, 1990). The problem with this classification is that these cut-off points are arbitrary and only two categories are used to characterize what is clearly a more complex and variable picture of adherence (e.g., complete adherence to one component of the regimen but partial adherence to another component). Furthermore, since the ideal level of adherence needed to achieve a therapeutic result is often unknown, it is difficult to establish valid cut-off scores. These problems seriously limit the usefulness of a categorical approach (J. A. Cramer, et al., 2008). A second and more preferred method measures adherence on a continuum. Adherence rates are calculated and presented as a percentage by dividing the number of treatments completed by the number of treatments prescribed (La Greca and Bearman, 2003). In general, this method is the most comprehensive and informative, and facilitates the examination of rates and patterns of adherence within the same individual (e.g., AED versus multivitamin), between individuals with the same condition, and between individuals with different conditions.

The Impact of AED Adherence on Health Outcomes Examining adherence in patients with epilepsy is critical because the consequences of poor adherence are extremely serious. Failure to take medications as prescribed can result in increased morbidity (e.g., continued seizures) and mortality (e.g., due to status epilepticus), drug resistance, drug reactions, reduced quality of life (Dew, et al., 2001) and high healthcare expenditures (Berg, Dischler, Wagner, Raia, and Palmer-Shevlin, 1993; DiMatteo, 2004b). Non-adherence is estimated to compromise health outcomes by as much as 71% (DiMatteo, Giordani, Lepper, and Croghan, 2002). Specifically, poor adherence to the epilepsy treatment regimen is likely one important contributor to continued seizures. Although few pediatric studies have examined this relation (Kyngas, 2000b), Bassili and colleagues (2002) found that Egyptian children who were non-adherent based on pill counts were 3.5 times more likely to have seizure reoccurrence compared to those who were adherent (Bassili, Omar, Zaki, AbdelFattah, and Tognoni, 2002). Several adult studies have also demonstrated a relation between non-adherence, as measured by pill counts, self-report, and AED serum levels, and more frequent seizure activity (J. A. Cramer, Glassman, and Rienzi, 2002; Gopinath, Radhakrishnan, Sarma, Jayachandran, and Alexander, 2000; Jones, Butler, Thomas, Peveler, and Prevett, 2006; Manjunath, Davis, Candrilli, and Ettinger, 2009)and less time since last seizure (Kemp, Feely, Hay, Wild, and Cooper, 2007). Interestingly, two studies have shown that adolescents, their caregivers (Asato, et al., 2009), and adults (J. A. Cramer, et al., 2002; Peterson, McLean, and Millingen, 1982) recognize that missing an AED dose resulted in a subsequent seizure. Overall, these studies indicate that non-adherence has a key impact on seizure control for both pediatric and adult populations; however, it is unclear whether non-

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adherence affects each patient in the same way. For example, several studies (Buck, Jacoby, Baker, and Chadwick, 1997; Friedman, et al., 1986; Gomes and Maia Filho, 1998; Mitchell, Scheier, and Baker, 2000; Peterson, et al., 1982; Snodgrass and Parks, 2000; Takaki, Kurokawa, and Aoyama, 1985) indicate that some patients who miss AED dosages do not experience increased seizures. Understanding which patients are at risk for seizures or what level of adherence is optimal is an important step for future research. Beyond seizure control, research has linked non-adherence to mortality in adults with epilepsy. A recent study conducted by Faught and colleagues, which used the medication possession ratio (MPR=Number of days in a time period with supplies for > 1 AED divided by the number of days in the quarter) in 33,658 adults with epilepsy, found that patients who were non-adherent had a 3-fold increased risk of mortality after controlling for key epilepsy and demographic variables (R. E. Faught, Weiner, Guerin, Cunnington, and Duh, 2009). Similarly, studies examining sudden unexplained death in persons with epilepsy (SUDEP) suggest that patients had suboptimal AED serum levels at autopsy (Leestma, Walczak, Hughes, Kalelkar, and Teas, 1989; Lund, 1974; Neuspiel and Kuller, 1985). These studies provide preliminary evidence that the consequences of non-adherence can be fatal for individuals with epilepsy. Understanding adherence to AEDs is of paramount importance because stopping and starting AEDs may lead to pharmacoresistance and intractability (Perucca, 2001). For example, it is unclear whether patients who miss occasional doses of their AED develop pharmacoresistance compared to patients with complete non-adherence (i.e., 0%). Poor adherence also affects health care provider behavior, potentially leading to increased dosages, discontinuation of medication believed to be ineffective (DiMatteo, et al., 2002; DunbarJacob and Mortimer-Stephens, 2001), or AED polytherapy. Recent data suggest that 71% of pediatric patients who had an AED dosage increase demonstrated suboptimal adherence and that the dosage increase may have been ―avoidable‖ with the institution of adherence interventions (Koumoutsos, Modi, Morita, Monahan, and Glauser, 2007). Similarly, data from clinical trials evaluating new treatments and effective doses can also be compromised by poor adherence to the treatment (Christensen, 2004; Urquhart and Chevalley, 1988). Finally, estimates of the health care dollars wasted due to poor adherence range from 100 to 300 billion annually(Berg, et al., 1993; DiMatteo, 2004a). Based on the RANSOM study, non-adherence to AED therapy was associated with a higher incidence of emergency room visits, hospital admissions, motor vehicle injuries, and fractures (R. E. Faught, et al., 2009). Similar results were demonstrated in elderly patients with epilepsy, including increased inpatient, outpatient, and total health care costs for patients who were nonadherent versus adherent (Ettinger, Manjunath, Candrilli, and Davis, 2009). The financial impact of poorly controlled epilepsy is significant, with annual direct costs of approximately $5,000 a year per child with uncontrolled seizures compared to $1,900 for children whose seizures are wellcontrolled (Argumosa and Herranz, 2004). Applying a non-adherence prevalence rate of 24.8%, a conservative estimate, suggests that 188.3 million medical visits result in patients not following the advice they are given (DiMatteo, 2004a). In sum, poor adherence is cited as one of the major causes of treatment failure. TAKE HOME MESSAGE:  AED non-adherence is associated with poor seizure control, increased risk of mortality, SUDEP, clinical-decision making, and unnecessary health care expenditures

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 179 Table 1. Medication Adherence Measurement TYPE Objective Pill Counts/ Prescription Refills

STRENGTHS

 Easy to collect in managed care setting  Inexpensive

Electronic monitors

 Continuous  Long-term  Real-time

Blood serum levels

       

Hair serum levels

Saliva concentration

   

Subjective Self-report

Provider Estimate Diary

Objective Quantifiable Sensitivity Clinical utility Objective Quantifiable Sensitivity Less invasive serum testing Objective Quantifiable Individual tailoring Painless (no venous access)

LIMITATIONS

 Variable prescription sources or unknown source  Does not account for samples  Presumptive dosing  Potential for medication discarding  Expensive  Technical problems  Lost monitors  Presumptive dosing  Pharmacokinetic variation  Short-term  Invasive  Debatable effectiveness  Pharmacokinetic variation

26-50% (Ettinger, et al., 2009; E. Faught, et al., 2008; Manjunath, et al., 2009)

14% (Mitchell, et al., 2000; A. C. Modi, et al., 2008; Takaki, et al., 1985) 43% (Shope, 1988)

11-34% (Buelow & Smith, 2004; J. A. Cramer, et al., 1989; J.A. Cramer, et al., 1995) 40-41% (Kemp, et al., 2007; Mattson, et al., 1988)

12-35% (Al-Faris, et al., 2002; AsadiPooya, 2005; Asato, et al., 2009; Kanner, 2003; Kyngas, 2000a, 2000b; Mitchell, et al., 2000; Shope, 1988)

4-60% (Buck, et al., 1997; Doughty, et al., 2003; Gomes & Maia Filho, 1998; Gopinath, et al., 2000; Hovinga, et al., 2008; Jones, et al., 2006; Peterson, et al., 1982)

 Debatable efficacy  Pharmacokinetic variation  Calibration to individual saliva production

 Feasibility  Patient perception  Inexpensive  Comprehensive  Multiple informant

 Social desirability  Recall biases  Developmental (young age)  Global estimates

Inexpensive Feasibility Simple Strong ecological validity  Comprehensive  Real-time/shortrecall periods  Minimize recall limitations

      

   

NON-ADHERENCE RATES Pediatrics Adults

Overestimates Poor accuracy Global estimates Poor adherence Time-intensive Expensive Scheduling for telephone diary  Limited age range

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Adherence Measurement Given the strong association between non-adherence and morbidity, mortality, poor quality of life and higher healthcare costs, establishing reliable and valid measures of adherence is imperative. Adherence assessment has been studied extensively within other chronic illnesses (e.g., asthma, cystic fibrosis, diabetes); however, the measurement of adherence to AEDs has received minimal attention, with the exception of a recent critical review (Paschal, Hawley, St Romain, and Ablah, 2008). Techniques to assess adherence to AED therapy have evolved in the past thirty years, yet no clear ―gold standard‖ has been identified. Objective (e.g., electronic monitors) and subjective (e.g., self-report) measures of adherence have been utilized within epilepsy and account for significant variability in rates across the lifespan. For example, non-adherence rates to AED therapy range from 12 to 43% for pediatric populations and 4 to 60% for adult populations (See Table 1). Each method has strengths and weaknesses (see Table 1), which need to be considered by both researchers and clinicians when determining how to best assess a patient‘s adherence.

Objective Adherence Measurement The use of objective adherence assessment has received increasing attention in the past twenty years due to advances in pharmacology and technology. Several objective adherence measures exist, including pill counts, prescription refill, electronic monitoring, and bioassay/serum levels, which will be reviewed below. Pill Counts and Prescription Refill Methods. Non-adherence rates with AED therapy, as measured by pill counts and prescription refill methods, vary from 26-50% in the adult literature (Ettinger, et al., 2009; E. Faught, et al., 2008; Manjunath, et al., 2009), but have yet to be applied within pediatrics. Pill counts and prescription refills are often used to infer adherence by recording the quantity of medication that remains in a pill bottle or the number of refills that have been obtained since the prior clinic visit. Although these methods are noninvasive, they are severely limited due to 1) the necessity of having individuals remember to bring in their medication bottles to clinic visits, 2) difficulty accounting for samples that patients may have been given, and 3) the potential for human error/deception (e.g., pill dumping). AEDs are also often prescribed in liquid form for young children who have difficulty swallowing tablets. Although the ingestion vehicle (i.e., liquid versus pill) is not a barrier to using prescription refill methods, pill counts may not be a consistently viable adherence method for young children with epilepsy. Obtaining prescription refill history has similar limitations to pill counts, as well as lack of proper documentation in medical charts and the use of multiple pharmacies by families, including on-line pharmacies which have become more popular. Given that many AEDs need to be dosed within certain periods of time (i.e., every 12 hours), pill counts and prescription refills do not provide the level of detail necessary to ascertain dosing-specific adherence. This level of information may be critical to identifying the potential causes of break through seizures for patients with epilepsy. Electronic Monitoring Methods. Non-adherence rates with AED therapy, as measured by electronic monitoring methods, vary from 14-21% in pediatrics (Mitchell, et al., 2000; A. C. Modi, Morita, and Glauser, 2008; Takaki, et al., 1985) and 11-34% in adults (Buelow and

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 181 Smith, 2004; J. A. Cramer, Mattson, Prevey, Scheyer, and Ouellette, 1989; J.A. Cramer, Vachon, Desforges, and Sussman, 1995). Recent technological advances have aided in the ability to automatically measure medication adherence by having computer chips embedded within medication vials (i.e. electronic monitoring). Specifically, a ―time-stamp‖ of precise medication dosing (i.e., tablet or liquid) is recorded and the date and time individuals open their medication vials is stored within the computer chip. Data can be stored for several months to a maximum of 3 years and is downloaded into data files based on the research/clinical needs. The Medication Event Management System (MEMS) caps are one example of electronic monitors used to examine AED adherence. The ability to capture adherence behaviors in ―real-time‖ over extended, continuous periods of time is a primary advantage of electronic monitoring compared to other adherence assessment techniques. Embedded within this strategy is the ability to detect more detailed information, such as: a) underdosing, b) overdosing, c) delayed dosing, d) dosing omissions over a brief period of time (i.e., drug holidays), and e) white-coat adherence (i.e., dumping medications or taking them consistently several days prior to clinic visits to improve adherence) (Quittner, Modi, Lemanek, Ievers-Landis, and Rapoff, 2008). Furthermore, electronic monitoring data provides a unique opportunity within epilepsy to examine the timing of dosing and whether specific ―dosing windows‖ are optimal to maximize seizure control.

Copyright Aardex Ltd. Figure 1. Patient Example of AED Adherence Data from the MEMS TrackCap.

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For example, Figure 1 shows detailed electronic monitoring information on when this patient took their AED doses (blue dots), missed doses (red triangles), and full days when no medication was taken (red lines). These data could be used to better assess the role of nonadherence on seizure control for individual patients. The precision of electronic monitoring in capturing medication dosing has been used as the criterion to determine the validity of other adherence measurement methods, such as selfreport and pill counts. Unfortunately, this technology captures presumptive medication dosing, as ingestion cannot be verified, and its clinical feasibility and utility is debatable at this time (e.g., cost, equipment malfunctioning, use of pill boxes). Although there continues to be debate about the best adherence measure, electronic monitoring appears to be the most innovative and precise measurement tool for AED therapy to date (J. A. Cramer, 1995; Rapoff, 1999) and likely represents the ―gold standard.‖ Biomedical Assay Methods. Biomedical assays provide quantitative data on the presence of medication in the body. Based on blood serum levels, the non-adherence rate for AED therapy is approximately 40% in adults (Kemp, et al., 2007; Mattson, Cramer, and Collins, 1988) and unknown in pediatric populations. Biomedical assays address a common concern of electronic monitoring, presumptive medication dosing, by confirming medication ingestion. AED levels in blood plasma or serum are the most commonly used biomedical assay to measure adherence. Ideally, patients provide blood plasma/serum levels when their level is a trough, defined as the point of minimum drug concentration. When serum levels are zero, patients who are on monotherapy can be assumed to be completely non-adherent to their AED for the few days prior to having their blood taken. However, decreased medication levels or subtherapeutic levels only indicate some degree of non-adherence but the level is unclear. Furthermore, determining non-adherence becomes more complex and challenging when an individual‘s treatment regimen involves more than one AED and when considering the multiple factors that determine AED serum levels. Specifically, pharmacokinetic variability involves the rate that a drug is absorbed, distributed, metabolized, and eliminated by the body (Perucca, 2002). Factors, such as demographics (e.g., body weight), pathophysiological (e.g., metabolic function), and therapeutic features (e.g., comorbid medications), can regularly alter dose-concentration relationships. For example, therapeutic doses often alter over time given the rapid growth and metabolic changes that occur during childhood, so a specific therapeutic dose may not remain therapeutic across developmental stages (e.g., transition from childhood to adolescence). Furthermore, biomedical assays only provide adherence information over a brief period of time (48-72 hours prior to assay obtainment). This is problematic when adherence rates over extended periods of time are of interest. Specifically, some evidence suggests that patients alter their adherence several days prior to clinic visits by engaging in white-coat adherence, defined as an increase in medication-taking prior to a clinic appointment or blood level assessment. Newer biological methods to assess adherence are also being tested. For example, AED levels detected from human hair (e.g., (Williams, et al., 2002)), either through gas chromatography mass spectrometry (e.g., (Goulle, et al., 1995)) or isocratic high-performance liquid chromatography assays (e.g., (Mei and Williams, 1997), and saliva concentrations (e.g., (Herkes and Eadie, 1990) have been more recently used additional biologic techniques to measure adherence. Although both human hair and saliva concentrations have been reported to have similar sensitivities to AED blood plasma levels, their effectiveness and clinical utility are debatable. Given that saliva concentration measurement is relatively

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 183 painless, this may be a promising method for measuring AED levels for children (Baumann, Ryan, and Yelowitz, 2004), as many children experience procedure-related anxiety when receiving blood draws and this approach does not necessitate venous access. However at present, their utility in measuring AED adherence is limited and pharmacokinetic variability likely also impacts their validity in measuring adherence.

Subjective Adherence Measurement Subjective methods of adherence measurement (e.g., surveys, questionnaires, interviews) are typically provided by patients and/or their caregivers and are commonly used by clinicians and researchers. While self-report methods are easy to obtain within clinic settings, significant discrepancies across subjective methods can exist due the depth and variability of these techniques. Several factors contribute to these discrepancies, including respondent (e.g., youth versus caregiver versus adult), setting (i.e., inpatient versus outpatient), assessment time frame and the psychometric properties associated with each measurement method. Although subjective adherence methods are based an individual‘s perception of their adherence and have practical utility (i.e., cost-efficient, comprehensive, practical), which contributes to their popularity, they are vulnerable to reporting biases (Rand, 2000). Subjective methods are also notorious for overestimating adherence behaviors when compared to objective methods and may represent global perceptions of adherence (e.g., ―Are often do you take your valproate?‖) versus quantitative measurement (e.g., ―How many doses of medication have you missed within the past week?‖). Self-Report Methods. AED non-adherence, as determined by self-report methods, vary from 12-43% in pediatrics (Al-Faris, Abdulghani, Mahdi, Salih, and Al-Kordi, 2002; AsadiPooya, 2005; Asato, et al., 2009; Kyngas, 2000a, 2000b; Mitchell, et al., 2000; Shope, 1988) and 4-60% in adults (Buck, et al., 1997; Doughty, Baker, Jacoby, and Lavaud, 2003; Gomes and Maia Filho, 1998; Gopinath, et al., 2000; Hovinga, et al., 2008; Jones, et al., 2006; Peterson, et al., 1982). Within epilepsy, there are no validated, disease-specific self-reported AED adherence measures. More commonly, and particularly within the adult population, AED adherence has been assessed using both structured and unstructured surveys and interviews, often by asking brief qualitative questions about medication taking behaviors (see (Paschal, et al., 2008) for a review). Qualitative questions aid in ascertaining the contextual and behavioral factors that may influence adherence. For example, Buelow and Smith (2004) developed a semistructured interview to establish a patient‘s perceived ability to manage their medications (Buelow and Smith, 2004). Embedded within this assessment are questions that more specifically probe about an individual‘s medication regimen (e.g., ―Tell me if you are able to follow their instructions and how difficult or easy it is to follow the instructions.‖) and strategies to overcome adherence barriers (e.g., ―Tell me strategies that you use to remember to take your medications‖). The Morisky scale has also been used with adults with epilepsy and includes questions about how often patients forget to take their medication (Morisky, Green, and Levine, 1986). Structured interviews also provide the opportunity to further explore an individual‘s responses with additional questioning (Quittner, et al., 2008). This qualitative approach is particularly useful when working with adolescents and adults, but may be less useful for younger children.

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Within pediatric epilepsy, as with other chronic conditions, caregivers are often asked to provide adherence information, given that they are typically responsible for medication management for toddler and school-aged children. While self-report techniques have limited validity for children under the age of 8 years (Quittner, et al., 2008), young children may often provide unique information regarding AED adherence that is critical for intervention. For example, children may cheek or hide their medications because of side effects or bad taste, which would only be known by asking children themselves. As school-aged children transition to adolescence, a combination of both parent-proxy and self-report is encouraged. This is particularly true given that adolescence is generally associated with a critical decline in adherence due to a shift in responsibility that commonly occurs, including decreased parental supervision (A.C. Modi, Marciel, Slater, Drotar, and Quittner, 2008). Future research needs to focus on the development and validation of adherence self-report questionnaires for children, caregivers, and adolescents. For example, Modi and colleagues recently developed and validated a Pediatric Epilepsy Self-Management Questionnaire that contains an Adherence to Medication scale. This scale holds promise because it demonstrated construct validity with electronic monitoring and a single item ad-hoc adherence question (rs = 0.220.35, p < .05; (A. C. Modi, et al., 2009). Provider Estimate Methods. Health care providers, such as physicians and nurses, have also been asked to estimate their patient‘s adherence to AED therapy. Generally, provider estimates include global ratings that are dichotomized to classify patients as either ―adherent‖ or ―nonadherent.‖ Although the clinical/research utility of provider estimates is appealing (i.e., inexpensive, simple), their accuracy in detecting non-adherence is questionable (Finney, Hook, Friman, Rapoff, and Christophersen, 1993) and represents an overestimation of patient adherence (Wang and Haynes, 1988). Health care providers may also be biased by their general perceptions of the family when estimating adherence (e.g., family chaos may implicate poorer adherence). Diary Methods. Another subjective measure of adherence that has received little attention in epilepsy is diary methods, which usually involve tracking and reporting daily activities, including when medication is taken. Although this method is similar to self-report, it can be more unobtrusive and indirect. Traditionally, individuals have generated written logs of their activities (e.g., when they take their medications), but more modern technological advances allow this data to be obtained through hand-held computers (i.e., PDAs) and telephone diaries (Freund, Johnson, Silverstein, and Malone, 1991; Quittner and DiGirolamo, 1998). Specifically, ecological momentary assessment (EMA; (Csikszentmihalyi and Larson, 1987)) and day construction methods (DRM; (Kahneman, Krueger, Schkade, Schwarz, and Stone, 2004)) address primary limitations of questionnaire/interview measurement: memory, recall, and social desirability (Johnson, 1995; A. C. Modi and Quittner, 2006b; Quittner, Espelage, Ievers-Landis, and Drotar, 2000). These strategies allow individuals to provide data ―in the moment‖ or within a short, recall period (i.e., 24 hours) so that the specific frequency of behaviors (quantitatively) can be assessed rather than global perceptions (qualitatively). These data more closely converge with objective data compared to self-report methods of adherence (A. C. Modi and Quittner, 2006b) and lends itself to examining temporal ordering of behaviors to identify barriers to adherence. This process-level information offers researchers the ability to develop adherence interventions by examining barriers within the context of an individual‘s daily life (e.g., sports activity disrupting routine and medication was subsequently forgotten). Individuals are likely to be more truthful in their reporting when

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 185 using daily diary methods because all daily activities are elicited (i.e., not just medication taking behaviors) and those participating in research are often unaware that adherence behaviors are a focus of interest (e.g., (A. C. Modi and Quittner, 2006b; Wiener, Riekert, Ryder, and Wood, 2004). On the other hand, daily diary methods are time-intensive, resource laden (e.g., training in use of technologies, time necessary for data collection), and are not designed for use with younger children. Two diary methods have been utilized within pediatrics to measure adherence: 24 hour recall (Johnson, Silverstein, Rosenbloom, Carter, and Cunningham, 1986) and the Daily Phone Diary (DPD; (Quittner and Opipari, 1994). Both measures have been classified as ―well-established‖ measures in a recent review of pediatric empirically supported assessments of adherence (Quittner, et al., 2008). Although diaries have been used with adult patients to track seizure activity, no studies have utilized diaries to assess adult and pediatric AED adherence. Taken together, each adherence measurement technique has the potential to provide unique, additive value in understanding how individuals with epilepsy manage their medications. As such, multi-method assessment that includes both objective and subjective indices of adherence are optimal when assessing AED adherence because results vary based on the measurement approach used (Mitchell, et al., 2000; A.C. Modi, S. M. Guilfoyle, et al., 2008). The future of adherence measurement studies is wide open for both pediatric and adult populations and there is a significant need to determine a viable tool for both clinical and research purposes. If self-report is the easiest and most clinically-useful tool to assess adherence, one potential way to reduce inflated results is to identify a ―correction factor‖ based on comparisons with a more objective measure (Jasti, Siega-Riz, Cogswell, and Hartzema, 2006). In contrast, if electronic monitors become more cost-efficient, they can be used in both clinical practice and for research purposes given their strong reliability and validity relative to other methods. Another important future direction in AED adherence measurement is the application of pharmacokinetic models to identify optimal AED serum levels based on the patient-specific factors (e.g., age, metabolism, weight) instead of using isolated serum levels to identify non-adherence. This type of therapeutic drug monitoring would be beneficial for patients because it would allow clinicians to provide treatment targeted at achieving a specific therapeutic level associated with the best seizure control and least side effects. TAKE HOME MESSAGE:  Electronic monitoring of AED adherence provides the most accurate portrait of adherence and should be used within clinical settings, if possible  Self-report methods are inexpensive but provide inflated reports of adherence; however, the development of more reliable and valid self-report measures is an important next step

Predictors of AED Adherence Understanding factors that contribute to poor adherence is a critical first step in identifying targets for adherence interventions. To date, several sociodemographic, medical,

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individual and familial, and healthcare-specific factors have been linked to AED adherence, which are represented in Figure 2.

Sociodemographic Factors Within the epilepsy adherence literature, associations between sociodemographic factors and adherence have been studied extensively. However, results of these studies vary based on how adherence is measured and the developmental period assessed. For example, age does not appear to be correlated with adherence in pediatric populations (Al-Faris, et al., 2002; Asadi-Pooya, 2005; A. C. Modi, et al., 2008; Takaki, et al., 1985), but findings are mixed for adults with epilepsy (Buck, et al., 1997; J. A. Cramer, et al., 1989; Dodrill, Batzel, Wilensky, and Yerby, 1987; Friedman, et al., 1986). Buck and colleagues (1997) reported higher selfreported adherence for patients over 60 years of age (86%) compared to those under 60 years of age (66%), and for patients over 20 years (72%) compared to adolescents (52%). In contrast, age was not correlated with saliva levels (Friedman, et al., 1986) or serum levels (Dodrill, et al., 1987) in adults. Although age appears to be unrelated to adherence, no studies have assessed the relations across the lifespan. However, it is likely that adherence declines during adolescence, a developmental period that is marked by a drive for independence and autonomy, which has been found in the broader adherence literature (Anderson, Ho, Brackett, Finkelstein, and Laffel, 1997; Mellins, Brackis-Cott, Dolezal, and Abrams, 2004; Zindani, Streetman, Streetman, and Nasr, 2006).

Figure 2. Comprehensive Model Depicting Predictors of AED Adherence.

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 187 Other sociodemographic factors have also been examined in relation to adherence, including sex, education, and socioeconomic status (SES) (Al-Faris, et al., 2002; AsadiPooya, 2005; Buck, et al., 1997; J. A. Cramer, et al., 1989; Dodrill, et al., 1987; Friedman, et al., 1986; Gomes and Maia Filho, 1998; A. C. Modi, et al., 2008; Snodgrass and Parks, 2000). For children and adolescents specifically, parental education, family composition, pubertal status, and parental marital status have also been assessed. Overall, data suggest no significant relations between adherence and sex or pubertal status. A single study has demonstrated that higher maternal age, positive family history for epilepsy, and large family size were correlated with poor adherence for children in Iran (Asadi-Pooya, 2005). These findings have yet to be cross-culturally replicated. The strongest finding in the epilepsy adherence literature is in relation to SES. Specifically, lower SES was associated with poor adherence for pediatric patients as measured by MEMS Trackcaps (A. C. Modi, et al., 2008) and serum levels (Snodgrass, Vedanarayanan, Parker, and Parks, 2001). Modi and colleagues (2008) also demonstrated that children of non-married parents exhibited lower adherence rates than children of married parents. Similarly, one adult study found that adults exhibiting AED nonadherence were more likely to have lower education and perceive themselves to be in financial distress (Dodrill, et al., 1987). Combined, these data indicate that lower SES and education negatively affects adherence to AED treatment. This is likely due to the competing demands and limited resources that families and patients experience. For example, an adult of lower SES and education may have financial strains that limit his/her ability to access AEDs or understand the importance of medication adherence. In turn, he/she may neglect to consistently take AEDs. Although sociodemographic factors are less amenable for modification, they are critical to consider when optimizing adherence.

Medical Predictors Although AED non-adherence has been consistently identified as a predictor of poor seizure control, epilepsy-specific factors that contribute to AED non-adherence are not well understood. Seizure and AED treatment characteristics, along with disease duration, have been the primary foci of research with inconsistent results across pediatric and adult epilepsy populations. Epilepsy Type. Patients with epilepsy can manifest several different seizure types; however, most patients are classified as having partial, generalized or unclassified epilepsy types. The type of epilepsy has not been consistently identified as a predictor of AED adherence (Buck, et al., 1997), particularly when objective methodology is utilized (A. C. Modi, et al., 2008; Takaki, et al., 1985). However, some studies suggest an association with generalized tonic-clonic seizures and self-reported AED adherence in both children and adults (Al-Faris, et al., 2002; Peterson, et al., 1982). That is, patients with tonic-clonic seizures tend to report better adherence on self-report questionnaires. Several explanations could account for this finding. The intensity and severity of tonic-clonic seizures may lead patients to perceive that they are more adherent, despite objective adherence findings. Conversely, individuals who have experienced tonic-clonic seizures, which are often unpleasant, anxietyprovoking, and potentially embarrassing, may be more motivated to adhere to their medication regimen.

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AED Dosing Frequency. Several studies have examined the role of AED dosing on adherence, which will increase as more sustained-release formulations come into the market. For example, a sustained-release formulation of valproate, which is commonly used to treat tonic-clonic seizures and requires only once daily dosing, has been used as an alternative option to VPA immediate-release, which requires twice daily dosing. To support this notion, Doughty and colleagues (2003) conducted an observational study of adults with epilepsy across eight European countries. Results identified that self-reported adherence improved when medication dosing frequency decreased from twice daily (e.g., VPA immediate-release) to once daily dosing (e.g., VPA sustained-release) (Doughty, et al., 2003). More importantly, this decrease in dosing frequency resulted in better seizure control. The association between dosing frequency and AED adherence was more rigorously tested by assessing adherence through the use of MEMS caps. In a seminal study, Cramer and colleagues (1989) explored adherence in both newly diagnosed and long-term adult patients with epilepsy. Results indicated that AED adherence systematically decreased as the frequency of medication dosing increased, with adherence rates averaging 87% for once daily dosing to 39% for four times daily dosing (J. A. Cramer, et al., 1989). These results were replicated in a controlled clinical trial using MEMS technology to assess adherence to vigabatrin (VGB) compared to standard AED treatment, for adults with complex partial epilepsy with poor seizure control (J.A. Cramer, et al., 1995). Monotherapy versus Polytherapy. Cramer and colleagues (1995) also compared adherence for adults using polytherapy, which is common for individuals with poor seizure control, to those on monotherapy. Findings indicated that polytherapy did not significantly predict VGB adherence (J.A. Cramer, et al., 1995). Yet in a study conducted two years later, polytherapy was significantly associated with AED self-reported non-adherence (Buck, et al., 1997). Authors speculated that patients following a polytherapy AED regimen likely have a history of higher seizure activity, which may lead them to feel more motivated to follow their treatment regimen. The association between the number of medications prescribed and AED adherence has not been supported in a pediatric sample (Asadi-Pooya, 2005). Overall, these data suggest that polytherapy may have an impact on self-reported adherence compared to when AED adherence is measured objectively. AED Side Effects. Medication side effects, which can affect physiology, cognition, emotion, and behavior, can detrimentally affect a patient‘s willingness to consistently follow their treatment regimen. However, poor medication adherence can also be caused by some of these same side effects. Although medication side effects have been linked to AED nonadherence in both pediatric (Al-Faris, et al., 2002) and adult (Eiser, 1993; Eisler and Mattson, 1975) samples, the reciprocal nature makes it difficult to know the direction of these findings. One notion suggests that the nature of the side effects, which often have deleterious effects on the central nervous system, are more obtrusive on psychosocial functioning and lead patients to stop taking their medications. On the other hand, patient motivation to consistently adhere to their medication regimen may be lowered by the frequency or intensity of the AED side effects, which may compromise quality of life and subsequent medication adherence. Further research is necessary to determine which side effects are considered tolerable and which have such adverse side effects that they compromise adherence and possible seizure control. Disease Duration. For most chronic conditions, such as diabetes and asthma, patients are expected to take medications for the long-term. In contrast, patients with epilepsy who are seizure-free for two years have the potential to wean from AED treatment, which can elicit

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 189 hope for patients. However, 30% of patients with epilepsy will develop pharmacoresistance or intractability. The burden and stress of managing epilepsy and taking AEDs long-term may have an impact on adherence. In a sample of 95 children and young adults prescribed phenobarbital with poor seizure control, Takaki and colleagues (1985) found that the percentage of adherent patients, as determined by plasma levels, was significantly higher in patients taking AEDs for at least 5 years compared to those taking AEDs for 0-4 years (Takaki, et al., 1985). However, duration of epilepsy was not a significant predictor of adherence in a community-based sample of adults based on self-report (Buck, et al., 1997) or within a pediatric sample utilizing more objective methods (Asadi-Pooya, 2005). Findings within the pediatric sample may be attributable to the young age of the sample and the brief period of time since seizure onset (i.e., less than two years). However, support for the association between disease duration and AED adherence detected within adult studies may have important implications for the adherence challenges faced by adults with intractable epilepsy. This may be particularly critical given that adults defined as ―nonadherent‖ to their AED within one year of medication initiation were found to be at a 21% higher risk for seizure activity compared to adults labeled ―adherent‖ (Manjunath, et al., 2009).

Individual and Family Predictors of Adherence Beyond socio-demographic and medical predictors of adherence for patients with epilepsy, there are multiple individual and family factors that have been shown to contribute to poor adherence. Individual factors include intellectual functioning, knowledge about the disease and its treatments, health/illness beliefs, perceived treatment efficacy, locus of control, psychopathology, and barriers and facilitators of AED adherence. Family factors include constructs such as family cohesion, organization, caregiver illness/treatment beliefs, and caregiver psychopathology. Cognitive Functioning. Only two studies have investigated the relation between intellectual functioning and AED adherence. One pediatric study detected higher blood serum level adherence in patients with higher intellectual functioning (Mitchell, et al., 2000), but this was not replicated in an adult sample (J. A. Cramer, et al., 1989). While it is likely that higher cognitive functioning is required to establish a foundation for good disease management, more research needs to be conducted to determine the skills necessary to maintain adequate AED adherence for a neurological condition such as epilepsy. Lack of Knowledge. Although the relationship between adherence and both disease and treatment-related knowledge remains equivocal in the larger adherence literature, researchers have concluded that disease-related knowledge is necessary but not sufficient to improve adherence to medical regimens (La Greca, Follansbee, and Sklyar, 1990; McQuaid, Kopel, Klein, and Fritz, 2003; A. C. Modi and Quittner, 2006a; Tebbi, et al., 1986). Within pediatric epilepsy, caregivers have reported needing more information about their child‘s disease (Shore, et al., 1998) and lacking knowledge about epilepsy. In fact, data suggest that only 29% of parents of children with epilepsy knew the name or dose of their child‘s current medication and 22% of parents believed that swimming should be prohibited even when seizures were well-controlled (Kwong, Wong, and So, 2000). Preliminary evidence suggests that increasing knowledge of epilepsy and its treatments may be associated with initial

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improvements in adherence (Dawson and Jamieson, 1971; Helgeson, Mittan, Tan, and Chayasirisobhon, 1990). Parallel evidence regarding deficits in disease and treatment knowledge has been found in the adult epilepsy population. For example, Gopinath and colleagues (2000) reported that approximately 39% of adults were unaware of the potential for AED side effects. Similarly, 86% of adults acknowledged awareness of avoiding AED dose manipulations; however, onethird of patients did not believe there was any harm in missing one AED dose when seizures were well-controlled (Gopinath, et al., 2000). Although it is clear that both pediatric and adult epilepsy populations may lack disease and treatment-knowledge, it is surprising that selfreported and objective (e.g., saliva levels) AED adherence were not significantly correlated with knowledge (Friedman, et al., 1986; Gomes and Maia Filho, 1998). Health/Illness Beliefs and Perceptions. Individuals managing epilepsy have beliefs and/or perceptions about their disease and treatments that may impact AED adherence. Two adult studies demonstrated that adherence improves when AED therapy is perceived to be beneficial (Eisler and Mattson, 1975; Stanaway, Lambie, and Johnson, 1985). In contrast, denial of the illness and personal views about treatment efficacy may compromise selfreported AED adherence in children (Al-Faris, et al., 2002; Asadi-Pooya, 2005). The perceived importance of AED therapy and the stigma associated with an epilepsy diagnosis also influence self-reported adherence behaviors. Specifically, adolescent and adult patients with epilepsy who believed taking AEDs was ―very important‖ were found to report higher adherence rates compared to those who felt it was ―fairly/not at all important‖ to take AEDs as prescribed (79% versus 29% adherence; (Buck, et al., 1997)). Furthermore, stigma associated with an epilepsy diagnosis has been found to be related to non-adherence in adults (Buck, et al., 1997). Although these findings have not been replicated with objective adherence measures (Kemp, et al., 2007), the data provide insight into the health-related beliefs that influence self-reported AED adherence. If patients view AED therapy as beneficial, important and non-stigmatizing, they are more likely to report higher adherence. Compared to other epilepsy treatment recommendations, such as refraining from alcohol use and maintaining adequate stress management and sleep hygiene, adults with epilepsy seem to feel more capable of managing their AED therapy (Kobau and DiIorio, 2003). Interestingly, adult patients with epilepsy who perceive themselves to be following the advice of their healthcare team and taking medications as prescribed may demonstrate a mismatch with their actual adherence behaviors. Specifically, Buelow and Smith (2004) demonstrated that objective MEMS adherence data was inconsistent with patient-reported beliefs about their own medication management. Of the 14 patients who reported no AED adherence concerns, 71% demonstrated suboptimal adherence rates (Buelow and Smith, 2004). Kemp and colleagues (2007) found that neither illness representation, defined as how patients view and make sense of their illness, nor illness beliefs were associated with objective serum level adherence for adults with epilepsy (Kemp, et al., 2007). Overall, illness/health beliefs and perceptions appear to influence how individuals perceive their adherence behaviors, demonstrating potential bias in reporting. However, health-related beliefs specific to epilepsy have not been linked to objective AED adherence. Internalizing/Externalizing Behaviors. Children and adults with epilepsy are at increased risk for internalizing disorders (e.g., depression, anxiety) compared to healthy controls (Kanner, 2003; Rodenburg, Stams, Meijer, Aldenkamp, and Dekovic, 2005; Vazquez and Devinsky, 2003) whereas externalizing (e.g., hyperactivity, oppositional behaviors) disorders

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 191 appear to largely affect the pediatric epilepsy population. Given the high prevalence of these disorders within epilepsy, there is a need to examine psychological factors contributing to poor adherence. The small literature examining the association between internalizing symptoms and AED adherence suggests no significant relation between these constructs (Dodrill, et al., 1987; Otero and Hodes, 2000). A single adult study indicated that worries about one‘s health may lead to higher self-reported adherence rates but this may be the indirect result of continued seizure activity contributing to elevated worries (Peterson, et al., 1982). A larger number of studies have examined the impact of externalizing symptoms in children on AED adherence. Behavior problems (e.g., inattention, lack of behavioral control) in children with epilepsy have been found to compromise adherence (Mitchell, et al., 2000). Similarly, Otero and colleagues (2000) found that children in the ―poor compliance‖ group had higher self-reported antisocial behaviors and parent-reported behavior problems. It is noteworthy that while oppositional and inattentive behaviors may serve as barriers to adherence, they may also be the result of AED side-effects, which are common (Besag, 2001, 2004). Family Predictors. Given the vulnerability of both pediatric and elderly populations, families and caregivers play a critical role around epilepsy management. For younger children and the elderly, the primary responsibility of ensuring that patients take their medication falls on the primary caregiver (e.g. parent, spouse); however, during adolescence, transition of responsibility from caregiver to the adolescent him/herself around disease management occurs. As the adolescent enters adulthood, the patient takes on sole responsibility for AED adherence. In pediatric epilepsy, lack of family harmony, lack of support, parental worry, and maternal hostility and criticism have been identified as family predictors of poor adherence (Hazzard, Hutchinson, and Krawiecki, 1990; Kyngas, 2000b; Mitchell, et al., 2000; Otero and Hodes, 2000). Given that adolescents are striving for increased autonomy and are developing a greater sense of self, caregiver-adolescent conflict may develop around epilepsy management. In fact, Friedman and colleagues (1986) identified that caregivers who excessively restrict the personal freedom of their adolescents compromise AED adherence, while those who foster a sense of autonomy in their adolescents promote better AED adherence (Friedman, et al., 1986). However, this data is not to negate that parental supervision is a necessary component for optimal AED adherence. Rates of self-reported adherence are high (87-88% versus 55-60%) when caregivers are primarily responsible for AED adherence (Asato, et al., 2009). Although research investigating the factors contributing to poor adherence among the elderly is only emerging (Ettinger, et al., 2009), family/caregiver variables for adults with epilepsy likely remain an area of future investigation. For example, many elderly adults have difficulty relinquishing typical disease management responsibilities that have been independently managed for many years.

Barriers and Facilitators of Adherence Researchers have attempted to elucidate patient-identified barriers and facilitators that may not neatly fit classifications outlined above. These patient-reported barriers provide critical data on potential targets for intervention to improve adherence.

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Common Barriers

Pediatrics

Adults

 Forgetting (Asato, et al., 2009)  Side effects (Al-Faris, et al., 2002; Asato, et al., 2009)

 Forgetting (Eisler & Mattson, 1975; Stanaway, et al., 1985)  Side effects (Eisler & Mattson, 1975)

 Asymptomatic (Asato, et al., 2009)  Medication unavailable (Asato, et al., 2009)

 Misunderstanding instructions (Stanaway, et al., 1985)  Changing/stopping doses (Eisler & Mattson, 1975; Stanaway, et al., 1985)  Fear of addiction (Eisler & Mattson, 1975; Gomes & Maia Filho, 1998)  Denial of illness (Eisler & Mattson, 1975)  Loss of medication efficacy ((Eisler & Mattson, 1975) & Mattson, 1975)

Unique Barriers

Adherence Facilitators  Reminders (Asato, et al., 2009)  Fitting medications into daily schedule (Asato, et al., 2009)  Pill boxes (Asato, et al., 2009)

Barriers that are similar across pediatric and adult epilepsy include forgetting and medication side effects (See Table 2). However, unique developmental barriers have also been identified. For example, one unique barrier for adults with epilepsy is fear of medication addiction (Eisler and Mattson, 1975; Gomes and Maia Filho, 1998), which may need to be proactively addressed by health care providers prior to initiating AED therapy. One study has also identified facilitators of adherence within pediatric epilepsy (Asato, et al., 2009). These parent-identified strategies (i.e., facilitators) may be beneficial in overcoming adherence-related barriers, particularly when these strategies are shared amongst caregivers.

Healthcare Predictors of Adherence Beyond the individual, family, and disease/treatment factors that impact upon adherence, a few studies have examined the role of healthcare professionals, clinic appointments, and the

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 193 system itself on adherence. Similar to adherence studies in other chronic illness populations, AED adherence is positively related to the number of clinic visits (Gopinath, et al., 2000) suggesting that closer follow-up facilitates better adherence. Given that attendance to clinic visits is often a precursor to AED adherence (Al-Faris, et al., 2002), it is not surprising that the visit itself may have some implications for adherence. The timing of clinic visits and its association with white-coat adherence has received some attention. Cramer and colleagues (1990) found that adherence within a sample of adults with epilepsy was significantly higher 5 days prior to and after a clinic visit (J. A. Cramer, Scheyer, and Mattson, 1990). However, white-coat adherence support was not detected in a sample of children newly diagnosed with epilepsy (A. C. Modi, et al., 2008). Sampling of adherence during different times of disease progress and development may account for such findings. For example, caregivers remain integral in seizure management for children, particularly shortly following diagnosis, which may minimize the likelihood of white-coat adherence occurring within pediatrics. Furthermore, some studies have suggested that a positive patient-provider relationship and patient satisfaction with their medical care can promote more optimal adherence. For example, Hazzard and colleagues (1990) found that higher adherence, as rated by physicians, was associated with greater satisfaction with medical care for caregivers of children with epilepsy. Similarly, Al-Faris (2002) reported that non-adherence was related to parental dissatisfaction with their child‘s clinical care (Al-Faris, et al., 2002). Within the adult population, effective physician-patient communication was correlated with higher adherence (Gopinath, et al., 2000). Although few studies have been conducted in this area, there is some evidence that satisfaction with medical care and a positive relationship with healthcare providers can promote adherence to AED therapy (Buck, et al., 1997). Future studies should further examine the role of providers, access to healthcare, and frequency of clinic visits on adherence in children, adolescents, and adults with epilepsy. TAKE HOME MESSAGE:  Key and consistent factors associated with AED non-adherence include lower socioeconomic status, lower AED dosing frequency, negative beliefs about epilepsy and its treatments, child behavior problems, poorer family functioning, and adherence barriers, negative relationships with the healthcare team

Adherence Interventions Despite over 25 years of research dedicated to understanding medication adherence and predictors of non-adherence in pediatric and adult epilepsy populations, there are virtually no studies focused on interventions to improve adherence in epilepsy. Peterson and colleagues (1984) conducted one of the only randomized controlled clinical trials testing the effectiveness of a multi-faceted adherence intervention for adults involving counseling, psychoeducation, self-monitoring, mailed reminders for clinic appointments, and follow-up for missed medication refills (Peterson, McLean, and Millingen, 1984). Trial results suggested improvements for medication adherence and serum drug levels. At present, interventions targeting adherence among children and adolescents with epilepsy have yet to

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be developed or conducted; thus, we will discuss adherence interventions from other chronic diseases that may be applicable to epilepsy and should be empirically tested in the future. Adherence interventions developed within other chronic conditions range from simple treatments that are primarily psychoeducational to more complex, multifaceted interventions, as evidenced by Peterson and colleagues (1984). Three of the primary intervention approaches targeting medication adherence include educational, organizational, and behavioral strategies (La Greca and Schuman, 1995; Lemanek, 1990)see Table 3). However, one of the most challenging aspects of addressing adherence is simply initiating a discussion about adherence barriers and strategies to facilitate adherence. Often this topic is unacknowledged or intentionally avoided by both providers and patients. Strategies that are often helpful to initiate discussion about adherence include normalizing and not criticizing families for adherence difficulties and being very specific about how they fit medications into their daily routine (e.g. when they take it, last missed dose, barriers they experienced). Table 3. Adherence Interventions Interventions Education

Intervention Components  Psychoeducation  Verbal and written instructions

Organizational

Behavioral

Multi-Component

  Regimen and daily schedule modifications   Self-monitoring  Problem-solving  Chaining  Contingency management   Integration of education, organizational, and behavioral  Social support  Social skills training  Family therapy

Helpful Strategies Conduct observations Instruction repetition Prioritizing skills Simple, easy to read handouts  CD-ROMS/videos   Simplifying regimens  Dose timing adjustments   Daily adherence logs  Visual reminders (e.g., calendars, charts)  Behavioral contracting  Positive reinforcement   Any of the above strategies    

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 195

Figure 3. AED Titration Schedule.

Educational strategies include health care providers offering factual information regarding the nature of the illness and its management, explaining the importance of following medication regimens, and providing guidance about the potential negative side effects of prescribed recommendations. Psychoeducation on the prescribed regimen, including anticipatory guidance about AED side effects, is critical because it can potentially compromise adherence. For example, some AEDS taken on an empty stomach can lead to stomach irritation and nausea. Discussion of this side effect and encouragement for patients to eat prior to medication dosing may prevent this side effect, thereby increasing AED adherence. Furthermore, periodic review of an individual‘s AED treatment regimen through the course of treatment can be beneficial, particularly when modifications to the regimen occur. For instance, when a new AED is initiated, a plan for titrating the medication is often reviewed with the patient. This strategy is particularly helpful to patients if reviewed both in written and verbal format and a copy is provided to the patient to take home (see Figure 3).

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Organizational strategies focus on the modification of regimen characteristics to promote better adherence. A common organizational intervention involves the simplification of a medication regimen. For example, if a patient with epilepsy is having difficulty following a medication regimen that involves twice daily dosing, an epileptologist may be able to simplify the regimen to once daily dosing if sustained-release formulations are available for a particular drug. However, when regimen simplification or schedule adjustments are not feasible, other strategies can be used. Brown and colleagues (2009) conducted a randomized clinical trial testing whether a simple, self-administered worksheet that asked adult patients to outline ―if-then‖ goal-based statements to improve AED adherence (e.g., ―If it is time X in place Y and I am doing Z, then I will take my pill dose‖). Results suggested that, compared to the control group, those in the intervention group demonstrated improved AED adherence (Brown, Sheeran, and Reuber, 2009). This intervention illustrates how a brief, easily administered self-report worksheet can be effective in increasing adherence behaviors. Finally, patients have anecdotally reported that use of pillboxes can be beneficial when placed in a convenient location, such as the bathroom or kitchen table. Behavioral approaches designed to optimize medication adherence often involve conducting a functional behavioral assessment (Carr, et al., 2000) of the adherence barrier and developing a specific plan to address the barrier. Basic behavioral approaches can include incorporating visual reminders (e.g., calendars, charts) or self-monitoring (e.g., tracking medication dosing through a daily log) to overcome forgetting. Chaining of behaviors, which is associating new behaviors with established behaviors (i.e., daily routines), is also a helpful strategy to promote adherence. For example, patients often benefit from chaining medication dosing to activities, such as eating breakfast or brushing their teeth. Contingency management strategies, which utilize basic behavioral principles, are helpful to motivate behavior change in young children. Specifically, caregivers can use charts or calendars to encourage behaviors that promote better AED adherence. By using behavioral charts/calendars, youth or their caregivers can mark off the days the AED was taken on a calendar or chart with the goal of working towards a reward, such as movie tickets. As mentioned, these more intensive interventions often include caregivers to implement necessary behavior change to optimize adherence. Supervision (i.e., monitoring) by caregivers is often necessary to facilitate adherence in children and potentially the elderly population. This may involve caregivers taking responsibility for the medication or monitoring the patient (i.e., child or adolescent) to ensure that the patient takes his/her AED at the correct dose and time. Increased supervision can also happen at the provider level at clinic visits. When adherence issues are identified, health care providers can engage the patient in an open dialogue to discuss adherence barriers and problem-solve these issues to facilitate adherence. Motivational interviewing (MI), which is a patient-centered clinical approach, has been found to have clinical utility in facilitating patient-provider communication about adherence barriers (Rubak, Sandbaek, Lauritzen, and Christensen, 2005; Suarez and Mullins, 2008). More frequent follow-up clinic visits often allows providers to consistently monitor progress and address adherence problems (i.e., subtherapeutic levels, behavioral issues). For example, an adult patient with substance abuse issues and limited financial resources may choose to spend their financial resources on alcohol or tobacco versus AED medications. MI techniques would provide the opportunity for clinicians to progressively discuss patient motivation to change their behavior. On the other hand, children and adolescents can often experience normative developmental issues (i.e.,

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 197 behavioral noncompliance), which can interfere with medication adherence. Strategies such as contingency management and token-economy systems have been found to be effective in addressing behavioral issues that compromise adherence. For example, a young child may have temper tantrums prior to medication dosing due to the medication taste or difficulties with pill swallowing. The implementation of a token-economy system by caregivers can ensure the necessary reinforcement to minimize the frequency of temper tantrums and increase behavioral compliance with AED adherence. Multi-component interventions integrate components of each of the aforementioned interventions to provide a more comprehensive and patient-specific intervention to target adherence behaviors. For example, Behavioral Family Systems Therapy (BFST; (Wysocki, Greco, Harris, Bubb, and White, 2001) targets family communication and problem-solving, but the treatment model has also been adapted to address adherence barriers (Wysocki, et al., 2006; Wysocki, et al., 2000). A recent meta-analysis regarding adherence interventions in pediatric populations suggested that behavioral and multi-component interventions have moderate effects on adherence compared to educational interventions (Kahana, Drotar, and Frazier, 2008). Given the paucity of interventions to address adherence in epilepsy, a critical next step is to develop and evaluate interventions to improve adherence for both pediatric and adult populations. TAKE HOME MESSAGE:  Adherence interventions in epilepsy are lacking; however, education, organization, and behavioral strategies to improve adherence can be applied to address epilepsyspecific non-adherence  Future research should focus on testing multi-component interventions, which include education about epilepsy and its treatment, behavior and organizational strategies, and family-based problem-solving for children/adolescents

Conclusion Overall, this chapter has highlighted key issues related to AED adherence in individuals with epilepsy, including measurement, predictors, outcomes, and interventions for AED adherence. As we look to the future of optimizing adherence to AEDs and patient healthrelated quality of life, it is imperative to systematically assess and discuss non-adherence within clinical settings. As outlined above, objective electronically-monitored adherence is a reliable and valid tool that has clinical utility but has not been used to its full potential to date. Although the expense of electronic monitors is their primary limitation, the data obtained from this method provides rich and critical data about adherence behaviors that may impact suboptimal seizure control. Using this measurement approach, one area for future research is to examine the natural history of adherence for individuals beginning at diagnosis to better understand patterns of adherence and whether adherence trajectories differentially impact health outcomes. Perhaps there are particular subpopulations that are at increased risk for nonadherence. Identification of these at-risk groups can enable clinicians to provide targeted interventions to those who most need it.

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Within the current clinical care model, there appears to be a ―don‘t ask, don‘t tell‖ policy regarding non-adherence because it often elicits strong reactions on the side of families and healthcare teams. Patients and families may feel a strong need to present well (i.e., high social desirability), which may influence self-reported adherence, and be less likely to openly discuss salient barriers that contribute to non-adherence. Furthermore, healthcare teams may avoid discussions about non-adherence, which could result in inappropriate dosage increases or changes to AEDs that are therapeutically unnecessary. For example, a child who has recently transitioned from a school year to summer vacation may have difficulties remembering to take a morning AED dose because of sleeping in, resulting in seizure recurrence. If this barrier is not acknowledged during a clinic appointment, it is not uncommon for a practitioner to increase the AED dosage to control the seizures. In contrast, open dialogue with patients and families can encourage the identification of barriers to adherence. Specifically, electronic monitors can have significant clinical utility because they can serve to provide a feedback loop to patients and their families during routine clinical care. Such models have been used successfully in the diabetes population through the use of blood glucose monitors, which are often downloaded at every clinic visit. Within our own work using MEMS TrackCaps, we have identified how one missed AED dose resulted in a seizure for a particular child with epilepsy, leading to a discussion of adherence behaviors with the family. In collaboration with this objective data, clinicians can also use self-report measures to further discuss adherence barriers with their patients. Normalizing and problem-solving barriers to adherence, which are identified through multi-method assessment, are the necessary first steps in helping families manage epilepsy. Another important area that has been neglected in epilepsy is the development, implementation, and evaluation of adherence interventions. Open patient-provider communication can provide necessary information to aid in developing these interventions. A critical first step to the development of epilepsy-specific adherence interventions is the identification of key predictors of non-adherence. Critical predictors of AED adherence include: sociodemographic (e.g., lower SES, education), medical (e.g., AED side effects, AED dosing frequency), individual (e.g., beliefs and perceptions about epilepsy, externalizing behaviors in children), family (e.g., conflict), and healthcare (e.g., satisfaction with medical care, positive patient-provider communication) variables. Although these predictors provide initial guidance about ways to facilitate adherence, such as choosing AEDs that require less frequent dosing and are associated with minimal side effects, researchers have yet to study and identify modifiable individual and family factors that impede or facilitate adherence. Specifically, little attention has been dedicated to the role of internalizing symptoms (e.g., depression) on adherence behaviors within epilepsy, although the link is quite strong for other chronic conditions (DiMatteo, Lepper, and Croghan, 2000). Similarly, what role does social support and stigma play on adherence behaviors and how do these differ across the lifespan? Psychosocial factors, such as the ones described above, are most amenable to adherence interventions. With this critical information, we can begin to develop individualized interventions that target patient-specific barriers to epilepsy management. Taken together, investigative efforts to identify additional, yet modifiable psychosocial predictors of adherence are warranted before epilepsy-specific adherence interventions are developed. Through clinical care and routine clinic visits, this information can be obtained via multi-method adherence assessment and patient-provider dialogue about adherence barriers. In turn, healthcare teams should highlight the importance of adherence to families, normalize

Adherence to Antiepileptic Drug Therapy across the Developmental Life-Span 199 non-adherence, and provide a ―safe environment‖ to discuss barriers so that patients with epilepsy and their healthcare teams can work collaboratively to make the best decisions for care. The onus will be on healthcare teams to emphasize monitoring of adherence with electronic monitors, review adherence data from past clinic visits, and prompt discussion of barriers to adherence if they are present. If families are demonstrating excellent adherence, this would be an opportunity to highlight and reinforce behaviors that promote adherence. On the other hand, when barriers are identified, early intervention to improve adherence is warranted, which could potentially change the course of the disease and its outcomes for patients.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter XII

Social Competence and Children with Epilepsy K. Rantanen, 1, 2 K. Eriksson 2, 3 and P. Nieminen 1 1. University of Tampere, Department of Psychology, Finland 2. Tampere University Hospital, Department of Pediatric Neurology, Finland 3. University of Tampere, Pediatric Research Centre, Medical School, Finland

Abstract The purpose of this chapter is to review social issues associated with childhood epilepsy. Social development is one of the key areas of development and has been associated with later behavioral, social and academic success. Particularly, in children with chronic illness social competence is essential for favorable long-term outcomes. Children with epilepsy are at risk of developing behavioral problems and impaired social competence. After a brief summary of definitions of social competence, this chapter will focus on the current knowledge about social competence, including behavior problems related to epilepsy. Protective factors are also considered. Social competence: This section begins with defining social competence. Social competence may be considered comprising four subcomponents; social skills, sociocognitive skills, absence of problem behaviour and prosocial behaviour. These subcomponents are prerequisite skills necessary for socially competent behaviour. Despite the definitions of social competence and the emphasis on social skills and prosocial behaviour, the majority of the assessment methods used in studies focus on one or two aspects of social competence, for example only the presence of behavior problems.

 Correspondence: Kati Rantanen, Neuropsychologist, Lic. A. (Psych.), Department of Psychology, University of Tampere and Pediatric Neurology Unit, Department of Pediatrics, Tampere University Hospital, Tampere, Finland. Tel: +358 3 3551 7344, Fax: +358 3 3551 7345, E-mail: [email protected].

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K. Rantanen, K. Eriksson and P. Nieminen Epilepsy, behavior and social competence: This section briefly reviews a body of literature demonstrating factors associating with social competence amongst children with epilepsy. Factors contributing to social competence in children with epilepsy are multi-factorial in nature. Mediators or possible predictors of lower social competence are discussed. Although, some mediators are related to epilepsy, more important moderators seem to be related to cognitive, family and environmental factors. However, there is still a lack of knowledge on the pathways of risk-factors, mediators and social competence. Implications on clinical practice: The need for early assessment and identification of deficits in social competence in children are emphasized. In clinical practice and epilepsy guidance, attention should be paid to the development of social skills and behavior of these children with epilepsy in order to support acquisition of age appropriate social skills and overall psychosocial development. It is important to support the overall psychosocial development and acquisition of age appropriate social skills. In order to promote peer relations, normal, age-appropriate physical and social participation should be encouraged in children with epilepsy. Conclusions: Although, risk factors for behavioural problems and psychopathology have been identified in children with epilepsy, the development of social competence in children with epilepsy should be studied further to increase our understanding of the possible developmental pathways to behavioral problems. These longitudinal studies are needed. This would also be beneficial regarding early intervention. Developmental, social and behavioral problems in early childhood may have long-lasting effects in later development and therefore the clinical implications of further studies are important.

Introduction Social development is one of the core areas of development and the development of social competence has been associated with later behavioral, social and academic success (Malone, 2007). Children‘s social functioning or competence is regarded as one of the best indicators of current and future behavioral and emotional problems (John, 2001). It is well known that children with chronic central nervous system (CNS) -related conditions, like epilepsy have an increased risk of developing behavioral problems (e.g. Nassau and Drotar, 1997) or mental health problems (Noeker, Haverkamp-Krois and Haverkamp, 2005), hence lower social competence. Childhood years are a rapid phase of cognitive and social development. Psychosocial tasks, like behavior or self control and compliance (e.g. the ability to develop and maintain frendships, to control one‘s behavior, to comply with parent‘s request) reflect domains of social competence (Masten and Coatsworth, 1998). Achieving social competence is critical in order to function successfully later in school and with peers. A socially competent person is able to achieve personal goals in social interaction and to maintain positive relationships with others (Rose-Krasnor, 1997). The aim of this chapter is to present a review of relevant research into social and behavioral issues relating to social competence and childhood epilepsy. First, definitions of social competence are briefly presented in order to provide an insight to different aspects of competent behavior. Secondly, issues and deficits regarding social competence are considered on the basis of studies conducted among children with epilepsy. Finally, in order to understand developmental pathways in children with epilepsy, it is important to consider possible risk factors as well as protective or resilience factors affecting different courses of the child‘s development.

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Defining Social Competence In general, the term competence refers to children‘s ability to adapt in their environment (Mash and Wolfe, 1999). However, there is no single generally accepted definition of social competence. Rather, definitions vary and different concepts like social skills, adaptive behavior, social functioning and social adjustment are used to refer to social competence. Despite this variety of concepts, some definitions related to social issues and competence in children are included here in order to provide a loose framework for understanding research in the field. First, from the developmental perspective Doll (1965, 1977) has defined social competence broadly as the individual‘s ability to function equivalent to age-appropriate and cognitive abilities. Social competence refers to the means of achieving the major developmental tasks expected of a child of a given age and gender in the context of his/her own culture, society and time (Achenbach, 1991). This also means the flexibility and ability to solve developmental problems and to adapt to different social contexts and demands (Masten and Coatsworth, 1998). The broader concept of ‗social competence‘ is usually understood as comprising subcomponents. For instance, Gresham and Elliott‘s (1987) definition of social competence differentiates between concepts social skills and social competence. The latter comprised two subdomains: adaptive behavior and social skills. Social skills refers to specific behaviors required to perform specific tasks competently. Social competence is regarded as an evaluative term based upon judgements that the person has performed a task adequately (Gresham and Elliot, 1987). Rose-Krasnor (1997) defines social competence as effectiveness in interaction. In her model, there is a basic distinction between self and other with both being necessary for good adjustment. Skill levels for social competence include the social, emotional and cognitive abilities and motivations associated with social competence. Behaviors like popularity and social acceptance or failure and motivations comprise the building blocks of interactions, relationships and group status. However, Rose-Krasnor (1997) emphasises that attributes (like skills, traits and motivations) of social competence cannot be assessed separately from their effectiveness in helping the child to achieve interpersonal, social goals and establishing positive relationships with peers. McCabe and Meller (2004) define social competence simply as a repertoire of skills, including knowledge of social standards of behavior, social problem solving, emotion recognition and understanding and communication. This definition covers some of the main aspects of the concept: cultural rules of social competence i.e. appropriate behavior and special skills (e.g. social problems solving skills, emotion prosessing and cognitive skills) needed to accomplish such behavior. Also, Cavell‘s (1990) model defines social competence as a multilevel construct comprising subcomponents of social adjustment, social performance and social skills. This tri-component model of social competence is considered to be sensitive to the effects of CNS conditions (like epilepsy or cerebral palsy). Although, conceptualizations of social competence vary, there is an agreement that social competence refers to a global judgement and is based on behavioral performance (Gresham, 1986). All of these definitions emphasize the importance of a person's ability to function as expected in his/her social environment and culture. Rose-Krasnor (1997) points out that social competence is a flexible, multidimensional construct of adaptive and effective functioning.

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Underlying CNS lesions and dysfunctions

Family and environment (e.g. parenting style, stigma)

Epilepsy factors (e.g. age at onset, seizure frequency)

Neurocognitive factors (e.g. mental retardation, attention problems)

Social skils

Sociocognitive skills

Absence of behavior problems

Prosocial behavior

Social competence Figure 1. A conceptual framework of social competence and its subcomponents in childhood epilepsy.

We have summarized some of the key aspects of the definitions by presenting a conceptual framework of social competence and its subcomponents in childhood epilepsy in Figure 1. First, it is clear that the association between epilepsy and social competence is complex and no direct causality has been demonstrated. But, both pathophysiological (i.e. CNS dysfunction or lesions) and environmental factors, including family-related factors may affect the development of social competence. This effect may be direct or mediated through epilepsy related and/or neurocognitive factors which in turn may also have an independent effect on the development of social competence (see also Noeker et al., 2005). Moreover, social competence may be considered as comprising at least four subcomponents. These subcomponents include social skills, socio-cognitive skills, absence of problem behaviors and prosocial behaviors. These subcomponents may be considered as basic or prerequisite skills necessary for socially competent behavior. Cognitive, social and emotional skills form the basis of social competence. Social skills usually refers to a repertoire of basic skills like the ability to start conversations and take turns. Socio-cognitive skills include for example the ability to detect and decode social cues, to generate responses in social situations and the accuracy of these functions (Dodge and Feldman, 1990). These skills are prerequisite for a child to be able to encode and interpret social situations and problems, and execute and evaluate plans to solve problems arising in social situations (Rose-Krasnor, 1997). There is some evidence that those children that are rejected by peers are less skillful at interpreting cues, or are biased in their attributions of others and have a tendency to generate more deviant responses (Dodge and Feldman, 1990). Therefore, impairment of these prerequisite basic socio-cognitive skills is also a risk factor for lower social competence in typically developing children. In addition to social and sociocognitive skills, the manifestation of prosocial i.e. socially desirable actions and absence of

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behavior problems or antisocial behavior (e.g. aggression and disruptive behavior) are considered to be the main aspects of social competence (Junttila, Voeten, Kaukiainen and Vauras, 2006). Socially competent behavior with peers reflects effective social interactions (Rose-Krasnor, 1997).

Deficits in Social Competence Social incompetence may be classified into four types: skill deficit, performance deficit, self-control skill deficit or self-control performance deficit (Gresham and Elliot, 1987). In skill deficit, a child has not learned the requisite social skills to behave in either an adaptive or socially skilled manner. With regards to performance deficit, a child has the knowledge and skills to perform a given behavior, but fails to perform it at an acceptable level (Gresham and Elliot, 1987; see also Kavale and Forness, 1996). Therefore, maladaptive behavior, behavioral problems and / or psychopathology may be considered as areas of undesirable behaviors that may interfere with the development of the child‘s social competence. Deficits in social competence may also be attributed to poor social skills or peer acceptance where socially unskilled children are considered to be less popular with peers (Gresham, 1986). There is evidence supporting the relationship between self-regulation, emotionality and social competence and later adjustment (Denham et al., 2003; Fabes and Eisenberg, 1999). Both regulation skills and emotionality may influence children‘s social competence with peers. There are certain behavior patterns, especially aggression and withdrawal that increase the children‘s risk for peer rejections and loss of friendships (Ladd, 1999). Antisocial behavior, related to behavioral, psychiatric and neurocognitive problems, particularly impulse inhibition and disruptive behavior are regarded as aspects of social incompetence (Junttila et al., 2006). Behavioral disorders or maladaptive behavior are usually classified into internalized and externalized problems (Achenbach, 1991). Internalized problems refer to a person‘s inner problems, for example depression and anxiety that are sometimes difficult to detect from overt behavior. Conversly, the externalized problems refer to aggression, conduct problems and destructive behavior that are clearly detectable and interfering with social interaction. Some of the key behavioral dimensions of children's social competence include prosocial behavior, externalizing behavior, and social withdrawal (Diener and Kim). Socially competent behavior with peers reflects effective social interactions (Rose-Krasnor, 1997). Operational definitions and assessments of social competence focus on outcomes (like peer acceptance), underlying social or cognitive skills or observable content associated with social competence. The majority of the assessments methods used in epilepsy related studies of social competence have focused on one or two aspects of social competence, for example on the presence of behavior problems. Hence, the absence of a psychiatric diagnosis and/or emotional and behavioral problems as observed by parents and/or teachers is often regarded as indicating socially competent behavior. Several different parent-, teacher- and child-reports and questionnaires have been developed for the assessment of children‘s social competence. In most of these instruments, the parent, teacher or child assesses the frequency of a given behavior. The most frequently used rating scales include Child Behavior Checklist (CBCL) (Achenbach, 1991, 1992) and Conners‘ Parent Rating Scales – Revised (CPRS-R) (Conners,

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1997). In addition to questionnaires, some studies have used structured diagnostic interviews, such as Kiddie Schedule for Affective Disorders and Schizophrenia (K-SADS) (Kaufman and Birmaher, 1997). Instead of behavior problems, some scales focus on adaptive behavior e.g. Vineland Scales (Doll, 1965 , 1977; Sparrow, Balla and Cicchetti Hamiwka, 1984), or on social skills, e.g. Social Skills Rating Scale (SSRS) (Gresham and Elliot, 1990) or on peer relationships and prosocial behavior, e.g. Strengths and Difficulties Questionnaire (SDQ) (Goodman, 1997). Most studies on social competence and behavior in children with epilepsy have been conducted with CBCL (Rodenburg, Stams, Meijer, Aldenkamp and Dekovic, 2005b). For instance, assessments of social skills and prosocial behavior are mostly lacking in epilepsy research. Moreover, instead of peer report data, studies have focused on parent and teacher reports. The assessment of social competence is based on outcomes rather than on the skill level or on the subcomponents.

Social Competence and Children with Epilepsy In the field of epilepsy research field, social competence is an area of ongoing research. The main focus of these studies has been on behavior problems and psychopathology. Children with central nervous system condition have an increased risk for behavioral problems. Therefore, epilepsy may be regarded as a pervasive condition that includes seizures, cognitive, behavioral and emotional problems (Plioplys, Dunn and Caplan 2007). A large and growing body of literature that has been published on behavioral and social issues in pediatric epilepsy demonstrates that the children with epilepsy have an increased risk of developing behavioral problems (Dunn and Austin, 1999; Nassau and Drotar, 1997). Results indicate increased levels of behavioral problems and psychopathology in children with epilepsy when compared to healthy children (Caplan et al., 2002; Caplan, Siddarth, Gurbani, Ott, Sankar and Shields, 2004; Caplan et al., 2005; Jakovljevic and Martinovic, 2006; Oostrom, Schouten, Kruitwagen, Peters and Jennekens-Schinkel, 2003a; Oostrom, SmeetsSchouten, Kruitwagen, Peters and Jennekens-Schinkel, 2003b), siblings (Austin, Harezlak, Dunn, Huster, Rose and Ambrosius, 2001; Austin, Dunn, Caffrey, Perkins, Harezlak and Rose, 2002) and children with other chronic conditions (Davies, Heyman and Goodman, 2003; McDermott, Mani and Krishnawami, 1995). However, there is great variation in the occurrences of psychiatric problems in children with epilepsy, ranging from 16 % to 60% (Davies et al., 2003; Keene et al., 2005; Ott et al., 2003). Several reviews have been conducted over the past years of the psychopathology or behavioral problems associated with epilepsy (for example Austin and Caplan, 2007; Dunn, 2003; Leonard and George, 1999; Plioplys et al., 2007; Rodenburg et al., 2005b). On the basis of these reviews, attention problems and thought problems are regarded as specific to epilepsy. Similarly, internalizing and social problems are also relatively specific to epilepsy. Internalizing problems reported in children with epilepsy include for example anxiety and depression (Austin et al., 2002; Keene et al., 2005; Schoenfeld et al., 1999). Also, externalizing problems (e.g. aggression, disruptive behavior) have been reported in children with epilepsy (Keene et al., 2005). Externalizing and disruptive disorders and impaired social communication in particular have been found to predict lower social competence scores

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(Caplan et al., 2002). In addition, children with epilepsy had lower scores on sociability and the activities when compared with their peers (Jakovljevic and Martinovic, 2006). Multiple factors including additional neurological impairment, neurocognitive deficits, intractable seizures and family related problems have been consistently reported to increase risk of behavioral problems in children with epilepsy (Dunn, 2003). In the following subsections these risk factors will be considered.

Epilepsy Related Factors and Social Competence There is evidence that behavior problems are associated with CNS or epilepsy related variables. First, and perhaps the most important risk factor for lower social compentece is underlying CNS lesion or dysfunction. With respect to etiology, cryptegenic or symptomatic epilepsy seems to have a strong association with both cognitive and behavioral problems. Symptomatic epilepsy refers to epileptic seizures with known etiology (e.g. as the result of identifiable structural lesions of the brain) (Engel, 2001). Idiopathic epilepsy refers to epilepsies with no underlying structural brain lesion or to age-dependent clinical manifestation and assumable genetic etiology (Engel, 2006; Hommet, Sauerwein, DeToffol and Lassonde, 2006). Most idiopathic epilepsies are uncomplicated which implies that there are no other neurological signs or symptoms and cognition is within normal range or only slightly impaired (Elger, Helmstaedter and Kurthen, 2004; Hommet et al., 2006; Mandelbaum and Burack, 1997; Motamedi and Meador, 2003). In this chapter children with epilepsy but without any associated neurological disorder or other chronic illnesses are referred to as uncomplicated epilepsy and children with epilepsy and other neurological signs or symptoms are referred to as complicated epilepsy. Adaptive behavior has been found to be impaired at the time of initial diagnosis in children with an underlying symptomatic etiology or a syndrome (i.e. epileptic encephalopathies) (Berg et al., 2004). Further, these children showed a significant decline in adaptive behavior scores at that time. Children with complicated epilepsy are reported to have fewer age-appropriate social skills and more attention and behavior problems than healthy children (Rantanen, Timonen, Hagström, Hämäläinen, Eriksson and Nieminen, 2009). Moreover, children with cryptogenic rather than those with idiopathic epilepsy are found to have more behavioral problems than their healthy classmates (Oostrom et al., 2003a). Studies have also indicated that severity of psychopathology is further exacerbated in children with both epilepsy and mental retardation (Caplan and Austin, 2000). Underlying brain abnormalities are often associated with impaired cognitive functions in children with epilepsy (Kobayashi, Ohtsuka, Ohno, Tanaka, Hiraki and Oka, 2001; Nolan et al., 2003). Children with symptomatic epilepsy are more likely have mental retardation (Vasconcellos et al., 2001). In population based studies, about 20–40 % of children with epilepsy are reported to have mental retardation (Camfield and Camfield, 2007; Eriksson and Koivikko, 1997; Sidenvall, Forsgren and Heijbel, 1996; Sillanpää, 1992; Waaler, Blom, Skeidsvoll and Mykletun, 2000). However, cognitive functions in children with idiopathic or uncomplicated epilepsy are mostly within normal range (see for example, Elger et al., 2004; Motamedi and

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Meador, 2003), although sometimes differing from healthy controls (e.g. Cormack et al., 2007; Høie, Mykletun, Sommerfelt, Bjørnæs, Skeidsvoll and Waaler, 2005). Other epilepsy related factors possibly associating with social competence include age at onset of seizures. Children with early onset epilepsy are at risk of behavioral problems and/or impaired social competence during their preschool years (Rantanen et al., 2009). Also, recurrent seizures and high seizure frequency are associated with behavior problems (Austin et al., 2002). It has been proposed that intractable seizures (i.e. uncontrolled) account for a significant portion of the variance in behavioral problems (Austin et al., 2001; Dunn, Austin and Huster, 1997). Especially, seizure frequency in the past year predicts behavioral problems (Schoenfeld et al., 1999). On the other hand, recurrent seizures predict behavior problems very early in the course of epilepsy (Austin et al., 2002). It is possible such seizures disrupt behavior or that children have negative psychological reactions to seizure activity (Austin et al., 2002). Behavioral problems may have already occurred in the earliest stage of the disease (Oostrom et al., 2003a). Or it is possible that children with prior unrecognized seizures may be at increased risk for behavior problems (Dunn, Harezlak, Ambrosius, Austin and Hale, 2002). Some of the epilepsy related factors may possibly interfere with the achievement of social competence (Kirsch, 2006). Although some (e.g. Høie et al., 2005) have found an association between psychosocial problems and epilepsy related variables, the majority of studies do not demonstrate any such correlation between seizure related variables (e.g. age at onset, epilepsy syndrome, seizure frequency and seizure type) and lower social competence scores (e.g. Caplan et al., 2005; Plioplys et al., 2007). Hence, some controversy exists whether it is the seizure related variables that affect or contribute to behavior problems, since they do not necessarily predict lower social competence (Caplan et al., 2004; Keene et al., 2005). Plioplys et al. (2007) suggested on the basis of their review that in cognitively normal children with epilepsy (i.e. children with uncomplicated epilepsy) epilepsy related variables seem to relate inconsistently to psychopathology. Rather, they suggested that lower social competence was more related to cognitive and family variables. Instead, cognitive problems or developmental delay, hyperactivity and autistic problems seemed to be more associated with children with symptomatic or complicated epilepsy or epilepsy syndromes (Plioplys et al., 2007).

Neurocognitive Impairments and Social Competence Possibly, seizures, cognitive impairment and lower social competence are caused by the same underlying neurological disorder (Dunn et al., 1997; Keene et al., 2005; Noeker et al., 2005). Due to strong associations between underlying CNS dysfunction and cognitive function, the development of social competence may be mediated or moderated through cognitive factors rather than epilepsy related factors. Behavior problems are typically more prevalent in those children with both epilepsy and intellectual or neurocognitive disabilities (Buelow, Austin, Perkins, Shen, Dunn and Fastenau, 2003; Caplan and Austin, 2000; Keene et al., 2005; Rantanen et al., 2009). But, cognitive impairment may, at least partly, be regarded as an independent factor contributing to social competence. A child with problems

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in basic cognitive skills is also more likely to have problems with social skills, hence social competence. There is for instance a subgroup with symptomatic or complicated epilepsy that has impaired cognitive functions and poorer social skills (Rantanen et al., 2009). In addition to impaired cognitive function or mental retardation, various specific neurocognitive deficits have been reported in children with idiopathic epilepsies. There is no typical pattern of neuropsychological impairment in idiopathic epilepsy (Deonna, Zesiger, Davidoff, Maeder and Roulet, 2000; Seidenberg, 1989) or in childhood epilepsy in general (Williams, Griebel and Dykman, 1998). Instead, a more diffuse neuropsychological profile with uncomplicated childhood epilepsy (Germanó et al., 2005; Williams et al., 1998) has been proposed. Neurocognitive variables can predict lower social competence scores and even the presence of psychiatric diagnosis predictors which may include impaired attention skills (Plioplys et al., 2007), social communication (Caplan et al., 2005) and verbal intelligence (Caplan et al., 2004). Studies have shown that attention problems in particular are characteristic of children with epilepsy (Plioplys et al., 2007; Rodenburg et al., 2005b). Attention problems are frequently reported in children with neurocognitive problems and also in school-aged children with idiopathic or uncomplicated epilepsy (for example, Henkin, Sadeh, Kivity, Shabtai, Kishon-Rabin and Gadoth, 2005; Oostrom, Teeseling, Smeets-Schouten, Peters and Jennekens-Schinkel, 2005; Williams et al., 1998). Attention problems include both inattentive type (Dunn and Kronenberger, 2005) and impulsive type, i.e. attention-deficit-hyperactivity disorder (ADHD) (Leonard and George, 1999; Williams, Schulz and Griebel, 2001). However, Dunn et al. (2003) have demonstrated that children with epilepsy differ from other samples of children with ADHD by the higher proportion of ADHD-inattentive type. Attention deficits may be one of the significant moderators for developing problems in social competence. Studies in typically developing children and children with attention deficits have shown that particularly impulsive behavior and hyperactivity are related to behavioral and social problems (e.g. Guevremont and Dumas, 1994; Landau and Moore, 1991). Children with inattention problems have also been found to display socially passive behaviors, and deficits in social knowledge (i.e. basic skills), but not in emotion regulation as do children with hyperactive problems (Maedgen and Carlson, 2000). Generally, inattentive behavior is associated with adjustment problems and lower self-esteem (Warner-Rogers, Taylor, Taylor and Sandberg, 2000). It is possible that children with epilepsy who lack the age-appropriate social skills and who have attention problems may be further predispose to behavioral problems (Rantanen et al., 2009).

Family Factors and Social Competence Recent studies have emphasized the importance of family functioning or family dysfunction in childhood epilepsy. Studies have shown that in addition to cognitive deficits, family factors may have a moderating effect on psychopathology (Plioplys et al., 2007; Rodenburg et al., 2005a). Epilepsy may have an immediate and significant impact on the family, which in turn may lead to changes in family dynamics. Epilepsy may become the focus of the parents‘ attention, for example parental anxiety towards epilepsy and recurring seizures may have an effect on social competence and adjustment. Williams et al. (2003) have

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demonstrated that parental anxiety was indeed one of the significant factors associated with overall quality of life for children with epilepsy. In particular, maternal anxiety about epilepsy may be associated with overprotective and overly directive parenting styles, as shown by Chapieski et al. (2005). In addition to parental anxiety, other family related factors, such as disorganized or unsupportive home environments (Austin, Risinger and Beckett, 1992; Rodenburg et al., 2005a; Thome-Souza et al., 2004) have been found to further affect neuropsychological and behavioral deficits in children with epilepsy. An association between a child‘s early temperament, family environment and behavioral problems has been established. Family adaptive resources have been found to be of importance by moderating the relationship between temperament and behavior problems (Baum et al., 2007). In their recent study Baum et al. (2007) demonstrated in children with new-onset seizures that difficult temperament and resistance to control correlated with behavioral problems, both internalizing and externalizing problems. Also, temperament dimensions of unadaptability were associated with internalizing problems. It is noteworthy, that family adaptive resources moderated the temperament of the relationships and the behavioral problems at school. Baum et al. (2007) concluded that low family mastery of children with difficult temperaments is a risk factor for behavioral problems. Whether the behavioral problems are primarily attributed to epilepsy, especially to seizure frequency or to cognitive problems, like attention problems and family dysfunction, remains inconclusive. It is also possible that family and environmental factors may be of greater importance in the maintenance of behavioral problems and lower social competence.

Protective Factors for Social Competence There is a solid body of studies demonstrating the risk factors and contributing factors for lower social competence in children with epilepsy. Despite the fact that some of these factors, e.g. intelligence and communication skills may be impaired in children with epilepsy, several protective factors are important for the development of social competence. Much less focus has been paid to resilience factors in studies. In clinical practice we do know that some children seem to be quite resilient and able to achieve positive outcomes despite the severity or intractability of epilepsy. In general, individual protective factors for typically developing children include temperament, intelligence and scholastic competence, effective communication and problem solving skills. Also positive self-esteem and high self-efficacy and, at the family level, protective factors include healthy relationships and positive parenting (see Mash and Wolfe, 1999). Epilepsy is characteristically a chronic condition with limitations and restrictions of participation. The children‘s social environment may be restricted and their social network altered due to epilepsy related factors. Most of the restrictions are related to re-occurring seizures in order to increase safety. Children and adolescents with epilepsy are often concerned and distressed about daily life restrictions and loss of independence (Ronen, Rosenbaum, Law and Streiner, 1999; 2001). Despite good seizure control, children may experience insecurity and fear of seizures. Unpredictable seizures may be one of the greatest fears in children and teens with epilepsy. Children and adolescents with epilepsy have a

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strong drive for normalcy, and perceive seizures as the major barrier to their sense of normalcy (Elliott, Lach and Smith, 2005). Promoting children‘s social participation and peer relations are important because friends play an important role in facilitating psychosocial adaptation with epilepsy (La Greca, Bearman and Moore, 2002). The ability to maintain mutual friendships is an important factor in children‘s social development even in preschool years (Lindsey, 2002). Close friendships may function as protective factors against mental and/or behavioral problems. Social support provided by friends may facilitate illness adaptation and promote health-promoting behaviors in children with epilepsy (La Greca et al., 2002). At best, older children and teens (over 13 years of age) with epilepsy have reported supportive and positive relationships with families and close friends (Wilde and Haslam, 1996). There are some qualitative studies that focus on childhood or adolescent perceptions and their experiences of life with epilepsy (Elliott, Lach and Smith, 2000; 2005; McEwan, Espie, Metcalfe, Brodie and Wilson, 2004). Studies have shown that the children consider their epilepsy to have had a great physical and social impact (Cheung and Wirrell, 2006). Children with epilepsy have reported worries concerning how they are perceived and treated by their peers (Ronen et al., 1999). For example, there is some evidence that some children may be reluctant to befriend peers with epilepsy, and that children and adolescents with epilepsy are more likely to be bullied (e.g. Hamiwka, Yu, Hamiwka, Sherman and Anderson, 2009). Particularly, adolescents with visible epilepsy have reported greater perceived loneliness, although fewer problems with adjustment (Curtin and Siegel, 2003). Also, concerns about life-style, school and later driving are frequent (Fisher et al., 2000). In order to promote peer relations, normal, age-appropriate physical and social participation should be encouraged in children with epilepsy. Children and adolescents with epilepsy are found to participate less in group or sporting activities than their siblings or peers (Wong and Wirrell, 2006). But it should be noted that epilepsy related variables; with the exception of seizure frequency, were not associated with this non-participation. Instead, Wong and Wirrell (2006) have found a tendency to withdraw from social activities in children with epilepsy. Support of healthy peer relationships is also important for the development of self-image and self-esteem. There is evidence that epilepsy may affect the development of childhood self-image/conception, identity and independency (McEwan et al., 2004). This may be partly due to restrictions associated with epilepsy. In addition to behavior problems, adolescents with epilepsy are at risk of lower self-esteem, loneliness and anxiety (Leonard and George, 1999). Although, some improvements in public attitudes towards epilepsy have been demonstrated, old ideas or attitudes toward epilepsy continue resulting in a difficult social environment for those children and families with epilepsy (Jacoby and Austin, 2007). Cheung and Wirrell (2006) have studied perceptions of physical and social impact of chronic illness. They found that a more negative social impact was still associated with epilepsy than with asthma, diabetes or migraine. In particular, negative impact was related to behavior, honesty, popularity, adeptness at sports and fun. More positive attitudes may help to improve problems with poor self-concept or behavior problems, although they might not influence social competence (Funderburk, McCormick and Austin, 2007). Scambler and Hopkins (1986) classified stigma into enacted and felt sigma. Enacted stigma refers to legitimated discrimination or restrictions as a consequence of epilepsy. Felt stigma is more complicated to define but relates to fear of discrimination and feelings of shame of being ‗epileptic‘. Due to

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felt stigma, persons with epilepsy try to hide their illness whenever possible. Therefore, felt stigma is usually more restrictive than public, enacted stigma (Scambler, 1984).

Conclusions In this chapter, we have reviewed current knowledge of social competence in the context of childhood epilepsy. Epilepsy is a pervasive condition that associates seizures with cognitive and behavioral problems. Several studies have reported behavioral and psychiatric problems in children with epilepsy. Although risk factors for behavior problems and psychopathology have been identified in children with epilepsy, knowledge of the interaction and mechanism of these factors and development of behavior problems is lacking. The effects of epilepsy on social competence and overall mental health may be indirect rather than direct (Noeker et al., 2005). Rodenburg et al. (2005b) suggested focusing on a multifactorial framework where both neurological and psychosocial factors are considered. Also, Noeker et al. (2005) proposed a conceptual framework of the possible causes, moderators and mediators of mental health outcome in children with epilepsy. Several risk factors, some relating to epilepsy, neuro-cognitive impairment and family functioning in children with epilepsy have been demonstrated. However, there is still a lack of knowledge on the pathways of epilepsy related risk-factors and development of mental health dysfunction, or weaker social competence. It is possible that the behavioral problems found in children with epilepsy are mainly related to overall cognitive capacity and specific neuro-cognitive impairments (e.g. attention). Although there may be an underlying neurological cause for lowered social competence demonstrated as behavior problems, it is possible that the lack of age-appropriate social skills or socio-cognitive skills predisposes children to behavioral problems. The risk of developing problems in social competence seems to increase especially if attention problems, both impulsive and inattentive behavior, are evident. In addition, problems in parenting may further increase the occurrence of difficulties in social competence. One possibility, as Rodenburg et al. (2005b) concluded based on their meta-analysis, is that some of the problems found in children with epilepsy may, at least partly, be associated with chronic illness in general, not specifically with epilepsy. Similarly, Plioplys et al. (2007) concluded that instead of seizure related variables non-epilepsy related variables may contribute more to mental health problems. For long-term outcomes, follow-up studies have also emphasized the predictive value of psychological and cognitive impairments instead of seizure-related variables (Sillanpää, Jalava, Kaleva and Shinnar, 1998). The earlier studies conducted on social competence in children with epilepsy have some limitations. The majority of studies have concentrated on the psychiatric aspects of behavior. Studies conducted on social skills and competence, e.g. mastering of age-appropriate social skills and peer relations rather than psychopathology are mostly lacking. Nevertheless, behavioral problems or antisocial behavior is just one aspect of social competence. By definition, the concept of social competence also refers to mastering social skills, to the individual ability to function in age-appropriate social contexts, and to adapt to different social demands. Yet, there are only a few studies focusing on social skills and peer relations. In a recent study, Tse, Hamiwka, Shermann and Wirrell (2007) focus on the social skills of children with epilepsy. They found that children with epilepsy had indeed poorer social skills

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and were less assertive than their siblings. Also, Rantanen et al (2009) demonstrated lower social skills than healthy peers. However, both of these studies concluded that lower social skills were associated more with complicated epilepsy i.e. children with symptomatic epilepsy or with additional neurologic impairments. Drewel, Bell and Austin (2009) recently showed that in typically developing children peer difficulties were related to inattention and anxious behaviors. In addition, some epilepsy related variables (i.e. age at onset and active seizures) were found to be associated with peer problems. Still, further studies are needed to gain greater insight into the developmental course of the social competence of children with epilepsy. In future studies and also in clinical practice social skills and adaptive behavior, as opposed to psychopathology, should be emphasized as important subcomponents of social competence (Tse et al., 2007). Buelow et al. (2003) suggested that children with epilepsy and low cognitive capacity should be carefully assessed for behavioral and mental health problems. Further studies on the social skills and the development of children with epilepsy are needed to increase our understanding of the possible developmental pathways to lowered social competence and to psychiatric problems in children with epilepsy. This would also be beneficial regarding early intervention. Also for professionals, preferably for a multiprofessional team, it is important to evaluate these issues associated with social competence for identification of child needs and treatment planning. In clinical practice and epilepsy guidance, attention should be paid to the development of social skills and behavior of these children with epilepsy in order to support acquisition of age appropriate social skills and overall psychosocial development. Especially, preschool-age represents on individual level a period of rapid cognitive and social development, which in turn is a basis for the subsequent development of academic skills and prosocial behavior during school age. Developmental, social and behavioral problems in this age range may have long-lasting effects in later development and therefore the clinical implications of the studies rewieved here are important. Therefore, it is of importance that these possible risk factors are recognized. Social and behavioral issues should be considered individually for each child. The fact that epilepsy is a heterogeneous condition should be taken into consideration, although for many children, seizures are well-controlled with modern anticonvulsants. Behavioral and social issues are of special importance for those children with refractory epilepsy and additional cognitive problems. The issues relating to social competence and protective factors in children with epilepsy discussed in this chapter may also be viewed against the model of International Classification of Functioning, Disability and Health, ICF, (WHO, 2001). In addition to functioning and disability, the ICF model emphasizes activity, participation and possible activity limitations and participation restrictions. Contextual factors, like facilitators or barriers are also considered in the model. These issues related to participation and restrictions are often familiar to children with epilepsy. It is of importance that parents have a realistic understanding of the condition and its consequences, including possible restrictions of participation. In particular, avoidance of unnecessary and unwarranted restrictions on everyday life should be emphasized. Parents may also need some guidance so that they can differentiate inappropriate behavior and pose age-appropriate demands and goals. Also, in clinical practice we should concentrate more on social skills and support the mastering of ageappropriate social competence. In addition, children and families would benefit from positive reinforcement as opposed to diagnosing comorbid behavior problems.

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To conclude, factors contributing to or associated with social competence in children with epilepsy are multi-factorial in nature. There are mediators or possible predictors to be considered of which some are more related to seizures and their etiology per se, but most important moderators seem to be related to cognitive, family and environmental factors. Firstly, the findings reviewed in this chapter emphasized the need for further studies on social competence in children with epilepsy. Secondly, the importance of early assessment and appropriate interventions are highlighted.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter XIII

Psychosocial Adjustment in Children with Epilepsy and Their Families Soraya Otero-Cuesta 1,2 and Amador Priede 1

1. Child and Adolecent Psychiatry and Psychology Unit, Department of Psychiatry, University Hospital Marques de Valdecilla, Santander, Cantabria, Spain 2. School of Medicine, University of Cantabria, Spain

Abstract Epilepsy is the most common chronic neurological illness in childhood and adolescence, and this condition increases the risk of psychopathology at these ages. Several studies find elevated rates of psychological and psychiatric disorders in these samples, both behavioural and emotional, compared to general population or children with other chronic conditions. The problems presented in children and adolescents with epilepsy are quite similar to those in general population with a slight increase of hyperkinetic and attention problems, as well as somatic complaints, likely related to both direct brain damage and anticonvulsant treatment. There is no evidence of psychotic disorders or specific personality traits associated with epilepsy at these ages. Psychopathology in children with epilepsy may be related with generic factors associated with children with chronic illnesses, such as withdrawn behaviour, somatic complaints, depression, delinquent behaviour, and aggressive behaviour. However, there are some symptoms relatively specific to children with epilepsy, for instance attention problems, social problems and thought problems. In spite of the biological basis of epilepsy, illness variables are weakly correlated with both psychological and social adjustment. Conversely, family factors such as parents' psychopathology, family coping with illness and stress and parent-child relationships seem to be the stronger predictors of child  Correspondence: Soraya Otero MD PhD., Hospital U. M. Valdecilla, Unidad de Psiquiatría y Psicología InfantoJuvenil, c/ LV de Velasco nº1, 39011, Santander, Cantabria, Spain. Tel.: (+34) 942330311, Fax: (+34) 942344251. E-mail: [email protected].

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Soraya Otero-Cuesta and Amador Priede adjustment. Therefore parental expectations and attitudes towards epilepsy could affect a long term process of psychological adaptation to the disease. As well as this, family interactions may play a critical role in child adjustment. Main findings include patterns of overcontrol by parents and less child confidence and higher levels of family stress. Interestingly, epilepsy families form more efficient problem solving units than healthy control families. Nevertheless, children with epilepsy appeared to withdraw from family interaction. Other remarkable findings in terms of expressed emotion, links good treatment compliance with less maternal hostility and criticism and also good compliance with less psychiatric symptoms. Future directions, both in research and in intervention, should include the use of psychiatric interviews and direct observation to gather information on psychopathology instead of assessments exclusively relying on scales and questionnaires. Also, neuropsychological assessment and neurodevelopmental perspective are essential in order to reach a model explaining complexity of relationships between epilepsy, brain, and behaviour. Finally, more pragmatic research is needed, designing and evaluating preventive and therapeutic approaches, identifying groups at risk for social and psychological problems and those factors predicting lack of adherence to treatment. These groups at risk must be the target of efficient interventions. As a conclusion, in order to attend to the magnitude and extent of psychological problems in children and adolescents with epilepsy and their families, it is necessary to amplify the focus to a multi-disciplinary perspective, capable to deal with the different factors involved in the illness.

Introduction Childhood epilepsy is a biologically based risk factor for child and adolescent psychopathology and family adjustment problems. Epilepsy is the most common chronic neurological illness in childhood, in fact, the prevalence of epilepsy in school aged children is between 4 and 7 per 1000 (Kim, 1991; Rutter, 1970). The association between psychopathology and epilepsy is as old as the scientific characterization of illness. In recent decades, there has been increased research interest in this field mainly due to the recent development of specific measurement instruments in child psychiatry and the improving knowledge about neuro-development illness factors. At the same time, family and social aspects have been recognized as influential factors in adaptation to the illness. In recent years epilepsy and family have been considered relatively new focuses for research. Even when seizures are well controlled, family factors like psychological adjustment, attitudes and expectations may contribute to a long term process of adjustment to the disease. At the same time illness aspects influence family life. The unpredictability and the experience during the seizure of being out of control are traits that make epilepsy different from other chronic illnesses. There is a large number of studies on the psychological consequences of epilepsy for children and their families, with diverse methodologies and samples that make it difficult to find clear clinical and treatment implications. Some of these are dispersed and not easily available. There are misunderstandings associated with epilepsy, such as neurodevelopmental and intellectual deficits, and different types of seizures and classifications. Moreover studies on this field have focused in different aspects of psychiatric disturbance and family influences. It is important to consider some methodological issues of the studies in order to correctly understand the findings. Most of the studies about epilepsy and

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psychopathology are cross-sectional and retrospective studies, some of them with control group (healthy controls, siblings and/or children with other chronic illness, like asthma or diabetes). The cross-sectional design only allows for analysis of correlation and consequently, whether the child‘s behaviour problems are a response to the epilepsy within a strained family environment or whether the child‘s irritable and destructive behaviour leads to stress and strain for family members, or more possibly both, is still controversial. Also, it is important to note the heterogeneity of studies in this subject and the wide range of questionnaires and scales, using mother, father and teacher as informants about child behaviour. Most used methods to measure the psychopathology, including scales like the Rutter Scales (Rutter, 1970) and the Child Behaviour Check-list (CBCL) (Achenbach, 1991), and interviews like K-SADS. Also diverse scales for anxiety and depression have been used. Not only can epilepsy increase the risk of disturbance in the child but also seems to have an adverse effect on the health of the rest of family, particularly parents and siblings. Many factors may be involved with this increased vulnerability including the type and severity of epilepsy, therapeutic control, adverse effects of anticonvulsants, the individual characteristic of children and their families and the presence of psychopathology in the child or other family member.

Children with Epilepsy: Psychopathology and Adjustment Prevalence The large number of studies investigating the association of psychopathology and epilepsy demonstrate a more elevated rate of psychiatric disorders in these samples than in the general population of children or in children with other chronic illnesses. Children with chronic illnesses have a 2.5 times higher risk for psychopathology compared with healthy controls (Lavigne and Faier-Routman, 1993), but in the case of epilepsy the risk for psychopathology compared with healthy controls and children with non-CNS chronic illnesses is 3 to 9 times higher. The classic community study of neuropsychiatric disorders in the UK (Rutter, 1970) found that 28.6% of children with epilepsy have psychiatric disorders, in comparison of 6.6% rate of psychiatric disorders for children in general population and 11.6% rate for children with chronic physical disorders. More recent investigations set the prevalence of mental health problems range from 16% to 77% (Baker et al., 2005; Datta et al., 2005; Hoie et al., 2006; Rodenburg et al., 2006) as compared with 11% in children with other chronic illnesses like diabetes and 9% in the general paediatric population (Davies et al., 2003). Discrepancies in this wide range of psychopathology across studies may be explained as methodological differences between them. In general, structured psychiatric interviews (like K-SADS) identify higher rates of psychopathology as compared to self-report instruments (like CBCL), which may or may not include the child as an informant (Ott et al., 2001). Also higher rates of psychopathology are reported in patients with chronic epilepsy (Caplan et al., 2005; Caplan et al., 2004) compared with new onset (Austin et al., 2002; Austin et al., 2001),

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and in cross-sectional studies (Ettinger et al., 1998; Hanssen-Bauer et al., 2007; Ott et al., 2003) compared with longitudinal (Austin and Dunn, 2000).

Type of Disorders and Symptomatology Until recent years children with epilepsy were classified as having a typical syndrome characterised by over-activity, impulsivity, aggression and distractibility. But subsequent research has found that the most disturbed children with epilepsy have the same range and type of psychopathology as other disturbed children (Hoare, 1984b; Hoare and Kerley, 1991; Hoare and Kerley, 1992). Furthermore the concept of ―epileptic personality‖ must be abandoned. Moreover some of these ―hyperkinetic‖ features may be related to medication, mainly phenobarbitone and benzodiazepines. Community studies (Rutter, 1970) among children with uncomplicated epilepsy, find that 12.7% had emotional disorder, 7.5% had conduct disorder, 4.8% had mixed disorder, and 1.6% had hyperkinetic syndrome. In another study from Finland (Siianpää, 1973), including all types of epilepsy, the profile is different, with 29.7% of children with neurotic disturbance, 11% with autistic features or psychosis, and 33.5% with hyperkinetic disorder. The first studies in this area concluded that these children have more but not different psychopathology than children with other chronic illnesses like diabetes or asthma (Austin et al., 1994; Hoare, 1984b; Hoare and Mann, 1994). Several authors underline that neurotic or emotional disturbance is the most common diagnostic category (Hoare and Kerley, 1991; Long and Moore, 1979). More recent studies, including the first meta-analysis in this area, show that children with epilepsy are at increased risk for the whole range of psychopathology (Rodenburg et al., 2005b). However, somatic complaints and attention problems are the most salient symptoms. Also, children with epilepsy appear to experience more internalizing (typified by social withdrawal, somatic complaints, anxiety, and depression) than externalizing (typified by aggression, defiance, hyperactivity and conduct problems) behaviour problems, though the rate of externalizing problems remains consistently high. According to these findings psychopathology in children with epilepsy is partly associated with generic factors associated with chronic illnesses in childhood, such are withdrawn behaviour, somatic complaints, depression, delinquent behaviour, and aggressive behaviour. Nevertheless, attention problems, social problems and thought problems are relatively specific to children with epilepsy as opposed to children with other chronic illnesses. Family factors (see below) are related more strongly to those behaviour problems that are relatively common to chronic diseases (namely, externalizing behaviour, withdrawal, and depression). In contrast, its not clear if the role of family factors contributes to behaviour problems that are more specific to epilepsy (namely, attention problems, thought problems, and social problems) (Rodenburg et al., 2005b).

Gender Gender variations are not consistent. While some studies found that boys with epilepsy show more problematic psychological adjustment than girls with epilepsy, (Hoare and Mann,

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1994; Stores and Piran, 1978) others found that girls have more depressive symptoms, somatic complaints, hyperactivity and withdrawal symptoms than boys (Austin, 1989; Austin et al., 1992). Some studies have not shown any gender differences (Baki et al., 2004; Hoare and Kerley, 1991; Rutter, 1970).

Child Adjustment and Self-Esteem Other aspects concerning child psychology have been investigated, for instance, children with epilepsy are more dependent than children with other chronic conditions like cystic fibrosis (Hartlage et al., 1972) or diabetes (Hoare, 1984b). The findings are related to neither illness severity nor parental attitudes. Self-esteem, self-concept and adjustment are related to psychopathology: children with behavioural problems have worse self-esteem (Hoare and Mann, 1994). Children with epilepsy have poorer psychosocial adjustment at school, more depressive symptoms, and worse self-concept than children with asthma (Austin, 1988). Furthermore, patients with epilepsy with the difficulties mentioned above ("worse adjustment at school, more depressive, and so on") are found to have worse seizure control rates than those with good adjustment or without depression (Austin, 1989). This study underlines the continuity of depressive symptoms in adult life of some people suffering from epilepsy and suggests that poor self-esteem, a symptom of depression, could begin from childhood.

Social Problems and Quality of Life Children with epilepsy are at increased risk for social difficulties compared with other children (Jacoby and Austin, 2007) and with siblings. Drewel and Caplan (Drewel and Caplan, 2007) found that children with epilepsy demonstrate lower social competence and more peer difficulties than typically-developing children or children with non-central nervous system health problems. These researchers‘ findings also indicated that social difficulties in children with epilepsy have been related, in a number of studies, to the cognitive, psychological and linguistic deficits seen in these children (e.g., lower IQ, externalizing and anxious behaviour and social communication deficits). Also, children with epilepsy, especially those with complicated early-onset epilepsy, had fewer age-appropriate social skills and more attention and behaviour problems than the healthy children (Rantanen et al., 2009). It is possible that the lack of age-appropriate social skills and the presence of attention problems make children prone to behavioural problems. Children with epilepsy also have social problems with peers (Drewel and Caplan, 2007). Behaviours related to anxiety and inattention are associated with difficulties with peers in children with epilepsy. Similarly, some epilepsy-related factors, such as neuropsychological deficits, earlier age at epilepsy onset, and active seizure status, are indirectly related to peer difficulties and directly related to anxious and inattentive behaviours in children with epilepsy. General theoretical models of peer difficulty would be useful also for children with epilepsy because of the similarities between these children and typically developing children with regard to variables related to their peer problems.

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Multiple studies have investigated the concept of Health Related Quality Of Life which does not directly evaluate psychopathology, but instead a patient's self-perceptions of wellbeing in the physical, mental, and social domains of life. Children with epilepsy are more impaired in Health Related Quality Of Life than healthy controls (Austin and Dunn, 2000; Connolly et al., 2006; Cramer et al., 1999; Miller et al., 2003; Raty et al., 2003) and children with non-neurological chronic illnesses (Hoare et al., 2000). Illness Variables The association between psychological adjustment and illness variables has been frequently investigated as a central point. The severity of illness predicts only in part psychosocial functioning and adjustment, and it could be analysed in different aspects: 





Frequency and type of seizures: higher frequency of seizures is associated with less social development but not with differences in academic achievement, and type of seizure is not significantly correlated with either of them (Hartlage and Green, 1972; Hartlage et al., 1972). In addition, other illness factors significantly associated with more psychological disturbance, are complex partial seizures, focal abnormalities in EEG, and severe fit frequency. Length of illness: there is a consistent relationship between the length of epilepsy and psychopathology in most of the studies (Rodenburg et al., 2005a; Rodenburg et al., 2005b). The length of illness has been associated with more prevalence of psychological problems not only in children but also in their relatives (Hoare, 1984a; Hoare, 1984b). An early onset of seizures can affect academic and social development. Degree of seizure control: children with a poorer control of seizures are more prone to social withdrawal, and have more somatic complaints than those with a better control. In samples of adolescents with epilepsy, the degree of seizure control, polimedication and stigma aspects are significantly associated with internalizing disorders and adaptation problems in these subjects (Adewuya and Ola, 2005). Children with intractable epilepsy are highly at risk for attention and thought problems, but also for social problems, withdrawn behaviour, and somatic complaints.

The influence of some of these variables could be modulated by the level of others: the studies (Rodenburg et al., 2005a; Rodenburg et al., 2005b) suggest that in those children with good seizure control, illness variables, except length of illness, are not related to psychological and adaptation problems. However in those children with more severe illness and/or poorer seizure control, illness variables have a significant impact on psychopathology. Family variables, illness influence on family life and family ability in coping with stress have been suggested as mediated factors on children psychopathology. Cognitive aspects of children with epilepsy such as IQ and linguistic competence have been related to illness variables (illness length, seizure frequency) and to antiepileptic drugs (Caplan et al., 2004; Rodenburg et al., 2006).

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Other studies offer a quite different profile underlining the absence of association between illness variables such as the severity or specific type of epilepsy and psychopathology in children with epilepsy (Caplan et al., 2004; Kim, 1991). Quality of life is affected in more severe cases and when these cases are considered, including those with brain damage, the results seem to be modified, showing that the quality of life is adversely affected mainly in the group of early onset intractable epilepsy with additional disabilities, and that poorer control of epilepsy is associated with more negative impact on family life (Hoare, 1993; Hoare and Russell, 1995). It is supposed that neurological dysfunction causes both behaviour problems and seizures. This does not exclude the fact, however, that other risk factors contribute to behaviour problems in children with enduring epilepsy. Children with uncontrollable seizures are especially at risk for the development of behaviour problems. Problems inherent to chronic diseases — such as unpredictability, distress, medication regimen, social stigma, and family stress — may arise in children with longer lasting epilepsy apart from neurological dysfunction.

Family Factors Family Psychopathology and Adjustment Parents Epilepsy is a chronic stressful condition for family life, and this could have consequences on the mental health of family members. Parents of children with epilepsy are more affected than those of the general population (Hoare, 1984a). Most studies show a concordance between psychological problems in mothers and behavioural problems in children with epilepsy (Rutter, 1970; Hoare and Kerley, 1991; Hodes et al., 1999; Otero and Hodes, 2000). Some researchers (Hoare, 1984a) suggested that this association could be modulated by the length of the illness, in fact it appeared only in those children with more years of evolution. There is a consistent relation between maternal depression and child psychopathology (Brennan et al., 2000; Dawson et al., 2003). Some investigators propose that this relation may happen through the disruption of quality of parenting (Burke, 2003; Dekovic et al., 2003). About one-third of the mothers of children with epilepsy are at increased risk for depression and showed associations between maternal depression and higher levels of child psychopathology (Hoare, 1984c; Hodes et al., 1999; Shore et al., 2004). Mothers of children with epilepsy are at risk for problems in adapting to their child's condition (Shore et al., 2004), and may be at risk also for anxiety (Li et al., 2008). However, some studies did not detect a difference in anxiety level between mothers of children with epilepsy and mothers of children without epilepsy (Baki et al., 2004; Williams et al., 2003). Mothers with higher levels of generalized anxiety are more anxious about their child‘s epilepsy (Chapieski et al., 2005). Nonetheless, coping resources of the mother may mediate the effects of generalized anxiety. Mothers who had social supports, or were comfortable talking about emotions, were less anxious about their child‘s epilepsy. However, family stress may aggravate maternal anxiety about seizures. In any case, maternal anxiety about epilepsy appears to decrease over time.

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Another important aspect of the relationship between the family and epilepsy concern the fictitious seizures induced by a relative. False epilepsy is not rare, because it is easy to fabricate and there are no absolute pathological or electrophysiological test that can diagnose the disorder. Most of these patients have occasional real seizures and additional multiple fictitious seizures induced by a relative, usually the mother. Apart from an increased risk for other fictitious disorders and/or child abuse, they were more likely to have had more physical investigations, and more hospital admissions, were absent from school and the prescribed drugs were commonly given irregularly. The follow-up of these children suggests an increasing risk for abnormal illness behaviour, fictitious disorder or chronic invalidism in adulthood. In these families, mother is described as dominant and the father absent or weak. Most of these mothers are ―hospital addicts‖ and over-involved with their children‘s care. Siblings Psychological problems of siblings have been often analyzed, and frequently healthy siblings are control groups of studies measuring psychopathology and behavioural problems in children with epilepsy. Siblings have fewer psychological problems than their brothers or sisters with epilepsy but were more disturbed than children in the general population (Hoare, 1984a). Siblings were found at elevated risk, with 25% being rated as disturbed (Hoare and Kerley, 1991). Interestingly, siblings of children with chronic epilepsy are more affected than those of newly diagnosed children.

Family Structure and Socio-Demographic Factors In most of the studies family structure, socio-economic, and culture are considered as descriptive variables but their interactions with epilepsy, psychopahology or other family factors are not analysed. The few studies considering a wide spectrum of family structure and socio-economic status generally failed to show an association between psychopathology and these variables (Austin et al., 1992; Rutter, 1970). However in one study, mothers from lower socioeconomic status were found more likely to report elevated anxiety about their children‘s medical condition (Chapieski et al., 2005). Probably their lower level of education made it more difficult for them to take advantage of information they received about epilepsy which increased their anxiety levels. The influence of culture is analysed, as far as we know, in only one study (Chavez and Buriel, 1988). They found that immigrant Mexican mothers exhibited a more positive feed-back to their epileptic children that their native-born Mexican-American counterparts.

Family Knowledge, Expectations and Attitudes Since most of the studies on psychopathology and epilepsy gather information from parents and teachers, it is of interest to review those studies regarding knowledge, expectations and attitudes of adults towards boys and girls suffering from epilepsy. Parents may show diminished expectations for their children with epilepsy in school outcomes, sports, concentration and choice of occupation, and they are expected to be more prone to emotional problems than their healthy siblings (Hartlage and Green, 1972). The parents

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perceive themselves as stricter and are more dominant in relation to their children with epilepsy. Families perceive their children with epilepsy as having a higher frequency of aggressive behaviour toward parents, with more immature behaviour, more dependency, expressing complaints of personal rejection and having frequent periods of emotional distress (Austin and McDermott, 1988; Ferrari et al., 1983; Hoare, 1986). Parental attitudes towards epilepsy are more equilibrated with both positive and negative expectations. Parents of children with epilepsy (Hoare, 1986) are realistic about the problems for their children, and have appropriate knowledge about seizures, illness and educational problems. There were no differences between mother's and father's attitudes, but they were more negative towards girls than boys (Austin et al., 1984). An interesting finding (Hoare, 1986) is that parental perception of seizure control is a better predictor of parental adjustment than the level of seizure control itself. In addition, parental attitudes towards their children with epilepsy seem to improve with the length of the illness (Austin and McDermott, 1988).

Family Interaction and Children Psychological Adjustment Studies Using Reports Most studies of family interaction rely on parental report. Only a minority of studies use direct observation of family interactions, all in laboratory settings. The main findings of studies about family interaction are the association between over-control by parents with less child confidence and more behavioural and emotional problems reported by parents, teachers and children (Carlton-Ford et al., 1997). Other studies show an association between parental acceptance and lower levels of externalizing behaviour problems (Sbarra et al., 2002). It is of interest that mothers who express more anxiety about their children‘s epilepsy are more likely to adopt a protective parenting style and to be more involved in solving problems for their children (Chapieski et al., 2005). This protective parenting style, however, was found to have a negative effect on the child‘s level of adaptive functioning in social situations and managing the requirements of daily living. Marital relationship has been considered a descriptive variable in some studies. For example, the Isle of Wight study (Rutter, 1970) does not find differences in psychological adjustment between children from broken and children from ―normal‖ homes. However, Ferrari et al. (1983) finds less cohesion and poorer communication between these families and lower prevalence of reported family closeness between the members of the families. They suggest that it could be an outcome of high marital discord. In the study of Hoare and Kerley (1991) the mean of marital satisfaction rating was within the over-all wide range for the general population. Expressed emotion studies (Hodes et al., 1999) conclude that mothers showed significantly more emotional over-involvement and a trend to have more hostility towards their children with epilepsy than towards sibling controls. High levels of criticism and, to a lesser extent hostility, are associated with child behavioural deviance. Strong links were found between maternal criticism and overactive behaviour in the child. Fewer positive

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comments by mothers towards the children are associated with child emotional symptoms and lower self-esteem. Family stress is significantly higher in families having a child with epilepsy, according to self-reports, in aspects related to dependency, cognitive impairment, restrictions for family, long-term care, anxiety about life expectancy and burden for parents (Rutter, 1970; Hoare and Kerley, 1991; Pianta and Lothman, 1994). Moreover parent–child relationship quality (Pianta and Lothman, 1994; Hodes et al., 1999) and parenting (Austin et al., 2004) are important contributors to child psychopathology, and parents of children with chronic conditions experience higher levels of parenting stress (Britner, 2003; Powers et al., 2002; Streisand et al., 2005). This stress probably has its origin in the burden of the care and the demands of a chronic illness (Wallander and Varni, 1998). In the case of children with epilepsy, parenting stress is even higher than in other chronic illnesses like asthma (Chiou and Hsieh, 2008). Rodemburg et al. (2007) found that stressors, resources, and parental coping behaviours are all significant contributors to parenting stress. The factors that would increase parenting stress are child‘s functional status, difficult child temperament, parental depression, and emotionfocused coping behaviours. Above all, parental emotion-focused coping behaviours are a major contributor to parenting stress. Factors that also contribute to lower levels of parenting stress are social support, family cohesion, and problem-focused coping behaviours. Parental perceptions of the child‘s functional status are associated with increased parenting stress, which may affect the degree of supportive parenting and parent–child relationship quality. Thus, the degree to which parents perceive child behavioural problems increases parenting stress, which subsequently impacts their affective and responsive parenting behaviours and compromises relationship quality. This may, in turn, have considerable consequences for child adjustment (Bleil et al., 2000). Difficult child temperament may lead to both, poorer parent–child relationship quality, and parents‘ ability to adequately control the child. Besides, parental depression impacts on parental behavioural and psychological control via parenting stress. This is in line with the existing literature about depressed mothers in the general population, who exhibit more hostile and intrusive behaviours toward their child and are less involved with their child (Goodman and Gotlib, 1999). Family cohesion contributes to lower levels of parenting stress, and leads to higher levels of parental behavioural control. Furthermore, the presence of social support also reduced parenting stress, which, in turn, contributed to higher levels of parental behavioural control and psychological control. Finally, problem-focused coping behaviours have direct effects on supportive parenting. In contrast, the effects of emotion-focused coping behaviours is an ineffective coping style, and lead to higher levels of parenting stress, which, in turn, leads to less behavioural control and higher levels of psychological control.

Studies Using Direct Observational Methods The studies using direct observational instruments display interesting information on behavioural patterns and interactions between family members. These findings include the fact that epilepsy families form more efficient problem solving units than healthy control families (Ritchie, 1981). The children with epilepsy appeared to withdraw from family interaction. A similar organisation was found in families with a child with mental retardation, and that was hypothesised to be adaptive in coping with the illness.

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Chavez and Buriel (1988) when comparing mother-child interaction between groups of children with epilepsy, asthma and healthy controls find differences in speech and non verbal interactions with fewer positive responses from mothers with children with epilepsy. Additionally, the children with epilepsy fail more often on structured tasks than children with either asthma or good health. Using interesting observational methodology the studies of the University of Virginia (Lothman and Pianta, 1993; Pianta and Lothman, 1994) underline the importance of parenting in the adjustment of children affected by epilepsy and the impact of epilepsy on parenting and family. Their hypothesis was that the fact that quality of child-mother relationship would increase child outcome beyond disease factors or child characteristics. This team developed several rates of mother behaviour with her child in two videotaped tasks, on the following dimensions: emotional support, respect for child autonomy, and quality of instruction. Moreover they rate observational measures of a child‘s independent problem solving on the following dimensions: confidence, self-control, task involvement, flexibility, dependency, task focus, positive affect and negative affects. These observational measures are correlated with ratings for parents and teachers about children competence. Their findings suggest that psycho-social adjustment in children is related to both parenting variables and child factors and that mother-child interaction correlated with teacher ratings about children‘s competence, behavioural problems and also with child confidence/involvement in a problem-solving situation requiring them to work independently. They correlate measures of mother-child interaction with behavioural problems measured with Child Behaviour Checklist (CBCL). The ratings of a child‘s self-reliance and co-ordination of affection in the mother-child relationship during the problem solving situation account for the largest variance of behaviour problems, especially with problems reported by parents (Pianta and Lothman, 1994). In addition when the sample is divided into two groups according to degree of seizure control, the analysis shows few differences between both groups in CBCL scales: only in somatic complaints on teachers ratings and in anxiety/depression, social, thought and attention problems on parents ratings, suggesting once again that mother-child interaction was a stronger predictor of children adjustment problems than seizure control (Nicholas, 1994).

Integrating Findings about Family Interactions and Psychopathology In a study of Rodemburg et al. (2006), analyzing predictors of psychopathology in children and adolescents with epilepsy, they found that family factors significantly influenced almost each type of child psychopathology. However, when the other significant family factors were controlled for, only the quality of parent–child relationship exerted influence on child psychopathology, whereas other significant effects of distal and contextual factors disappeared. Thus, the parent–child relationship quality was found to be the most important contributor to child psychopathology, and it would mediate the effects of distal (parental characteristics) and contextual (quality of other family relationships) family factors. As is quoted above, consistently through the studies, family factors are related more strongly to those behaviour problems that are relatively common to chronic diseases and they are more strongly related to psychopathology in children with epilepsy than are epilepsy-related factors. Thus authors come to the conclusion that these findings indicate that it is especially

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the presence of a chronic condition that places demands on the family, rather than the effects of specific disease parameters. Some authors have proposed models regarding families with a member affected by a chronic illness that could be useful in helping us understand and integrate the findings in these families. The Structural Family Model proposed a model of families with a chronic illness (Minuchin et al., 1975). They consider that there are some other elements defining these families besides the physiological disorder present in a chronic somatic illness. First, enmeshment with great interdependence and weak subsystem boundaries. Second, overprotectiveness from parents delaying the development of child‘s competence and autonomy. Also overprotectiveness by the child who protects the family by using his or her symptoms. Third, rigidity and denial of the need for a change, and fourth, as a consequence of these three previous conditions, these families avoid conflict resolution since the ill child plays an important role in this avoidance. This type of family interaction pattern is prone to use illness as a means of communication (Minuchin et al., 1975). There is no serious research on this model but some consistent findings such as more dependency in the child, overprotectiveness and problems in coping with the illness in some of these families seem to give some support to this model. Another model related to the previous is the Bio-behavioural Family Model of chronic illness (Wood, 1994). It proposed a model with integration of individual, family and social factors and offered therapeutic approach to families with children with a chronic illness. This model added a psychobiological factor, the bio-behavioural reactivity, which is conceptualised as a degree of physiological, emotional or behavioural response to stimuli. Table 1. Main findings regarding psychopathology and psychological adjustment in children with epilepsy Prevalence  More elevated rate of psychiatric disorders in children with epilepsy than in the general population of children or in children with other chronic illnesses Specific findings  Children with epilepsy are at increased risk for the whole range of psychopathology.  Some of the psychological problems would be related with generic factors associated with chronic illnesses (such as withdrawn behavior, somatic complaints, depression, delinquent behavior, and aggressive behaviour).  Other psychological problems would be associated with specific factors to children with epilepsy (attention problems, social problems and thought problems).  Children with epilepsy are more dependent, have worse self-concept and poorer psychosocial adjustment.  Increased risk for social difficulties, lower social competence and more peer difficulties Illness variables  More frequency of seizures is associated with less social development.  Consistent relationship between the length of epilepsy and psychopathology.  Children with a poorer control of seizures are more prone to social withdrawal, and have more somatic complaints. Family factors  Family factors are consistently related with behavior problems in children with epilepsy and stress is suggested as a mediating factor.

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.

According to this model a high level of individual reactivity in the child with epilepsy is a risk factor for chronic disease activity. A second factor, interpersonal responsivity, is determined in part by individual bio-behavioural reactivity, and defined as the degree of physiological, emotional or behavioural response with which family members respond to each other. Studies on Expressed Emotion in families with a child affected by epilepsy or other chronic illnesses can give indirect support to this model. In addition, other family factors such are proximity, generational hierarchy, triangulation and dysfunctional parental relationship also play a role in ―drawing‖ the maladaptive family configuration. The author proposed several models of dysfunctional family configurations and specific techniques to modify these maladaptive structures (see Table 1 and schema 1)

Intervention Programs for Families There are few studies of psychological interventions for families with children with epilepsy. Lewis et al. (1990) conducted a randomised controlled study to test the efficacy of a child and a program focused on family intervention in the experimental group. This was a study with a control group and all participants were pre-tested and re-tested five months after the completion of the educational intervention. The study showed that, an educational intervention to teach decision-making and communication skills, was more effective than the traditional lecture/question and passive format questions in children groups. In families, the experimental group improved their knowledge and skills to manage seizures at home and reported reduction in visits to emergency room, as well as the associated stress. Moreover

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they reported they were less restrictive with the child and permitted their child to participate more often in decisions regarding self-care and seizure control. Parental anxiety was reduced after the intervention in the experimental group. Hoare and Kerley (1991, 1992) proposed a group programme for parents with a child suffering from epilepsy and analysed the participation, responses and expressed need in these families. This intervention project was unsuccessful because only 12% attended the meetings with high attrition rate. The parents who attended the programme had children with severe epilepsy and educational or family problems. The authors suggested that individual or group programmes carried out in order to reduce anxiety or improve social skills in these children are more likely to be successful. Some new interventions have been created in the last decade, showing that they may be beneficial for family adaptation to epilepsy. Austin et al. (2002) developed a psychoeducational family intervention, called "Be Seizure Smart," focused on improving attitudes and increasing family functioning. The intervention was individually adapted to each family member by (a) providing information about epilepsy, treatment, and seizure management according to the individual's knowledge base, (b) addressing unique concerns and fears, and (c) providing emotional support. It increased the information and knowledge level for both parents and children. Children had fewer concerns and were more satisfied with family relationships. Also, child and parent attitudes were more positive after the intervention. Shore et al. (2008) investigated the usefulness of the Seizures and Epilepsy Education (SEE) program about the improvement of life quality, management of the seizure condition, and healthcare implementation in families having a child with epilepsy. Both parents and children after attending the SEE program improved their quality of life relating to child mental health. Parents had less emotional impact on the child‘s condition, fewer worries, and greater knowledge related to epilepsy. Another aspect of the link between family, epilepsy and treatment is therapeutic compliance. Lack of adherence to medical regimens is a frequent problem, especially in the child with epilepsy since successful treatment is based on the regular intake of anticonvulsant drugs. Using protocols developed from the Theory of Reasoned Action (Ajzen, 1980), Austin et al. (1989b), measured behavioural intention, attitude towards behaviour and subjective norms, and also medication giving behaviour, reported by the parents through mail. According to this model, behavioural intention influences behavioural compliance, and is a function of both, attitude towards the specific behaviour and subjective norms. The results suggest that subjective norms are the stronger predictor of parental compliance behaviour, but also parent‘s attitudes toward giving anticonvulsant medication and behavioural intention are important in the prediction. Regarding parent-child relationships it has been concluded that good treatment compliance is associated with less maternal hostility and criticism, and suggests that assertive paediatric and psychosocial intervention may be useful for some children with epilepsy (Otero and Hodes, 2000).

Conclusions Nearly forty years of investigations concerning psychopathology in children with epilepsy have led us to a better understanding of the underlying processes involved in

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children and family adaptation to the illness (Otero, 2009; Plioplys et al., 2007; Rodenburg et al., 2005b). Children with epilepsy are at higher risk for the whole range of psychopathology. Psychopathology should be divided into two groups, on the one hand, attention problems, social problems and thought problems that may be related to epilepsy as a brain dysfunction, and on the other hand withdrawn behaviour, somatic complaints, depression, delinquent behaviour, and aggressive behaviour which are more related to epilepsy as a chronic condition. Also, parents and siblings of these children are more prone to the development of psychopathology compared with the general population, due to the fact that epilepsy is a chronic stressful condition for family life. Epilepsy and family is an important focus because psychopathology in children with epilepsy is more related to family factors than to epilepsyrelated factors. Only length of illness can play a minor role, affecting adaptation of children. There is a wide range of findings and heterogeneity in the field of the psychopathology in children with epilepsy and their families. An integrated model on epilepsy and family may be useful to organise information and design both intervention programs and future research. Our global schema (see schema 1) includes family interactions, behavioural and emotional aspects in children with epilepsy and illness factors. Nothing about cause-effects direction is clearly known but these aspects are the real challenge for future research. The magnitude and extent of problems in children and adolescents with epilepsy and their families make it necessary to focus on the problem from a transdisciplinary and multiaetiology perspective considering the bi-directional interactions between all involved variables. It should be important to take the following advice into consideration in order to perform better interventions. First of all, we should improve instruments and protocols to identify those children and adolescents with epilepsy at risk for developing psychopathology. Secondly we should consider the whole family in the treatment, in order to increase family adaptation, and to reduce parental responses of anxiety and depression. These interventions should include suitable information about the illness, strategies to reduce parent stress and provide problem-focused coping strategies. This point is also important for investigation goals, because the studies of interaction may bring more complete understanding about the variables influencing outcomes in child and adolescents suffering from epilepsy. Finally, a developmental point of view would be useful in order to clear the age influence and effects of epilepsy on different development tasks, effects of timing of onset and possible residual effects if it remits.

References Achenbach, T. M. (1991). Manual for Child Behavior Checklist/ 4-18 and 1991 Profile. Burlington, VT: University of Vermont, Dept. of Psychiatry. Adewuya, A. O., and Ola, B. A. (2005). Prevalence of and risk factors for anxiety and depressive disorders in Nigerian adolescents with epilepsy. Epilepsy Behav, 6(3), 342347. Ajzen, I., and Fishbein, M. (1980). Understanding attitudes and predicting social behavior. Englewood Cliffs, NJ: Prentice-Hall. Austin, J. K. (1988). Childhood epilepsy: child adaptation and family resources. J. Child Adolesc. Psychiatr Ment. Health Nurs, 1(1), 18-24.

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Austin, J. K. (1989a). Comparison of child adaptation to epilepsy and asthma. J. Child Adolesc. Psychiatr Ment. Health Nurs, 2(4), 139-144. Austin, J. K. (1989b). Predicting parental anticonvulsant medication compliance using the theory of reasoned action. J. Pediatr Nurs, 4(2), 88-95. Austin, J. K., and Dunn, D. W. (2000). Children with epilepsy: quality of life and psychosocial needs. Annu. Rev. Nurs Res, 18, 26-47. Austin, J. K., Dunn, D. W., Caffrey, H. M., Perkins, S. M., Harezlak, J., and Rose, D. F. (2002). Recurrent seizures and behavior problems in children with first recognized seizures: a prospective study. Epilepsia, 43(12), 1564-1573. Austin, J. K., Dunn, D. W., Johnson, C. S., and Perkins, S. M. (2004). Behavioral issues involving children and adolescents with epilepsy and the impact of their families: recent research data. Epilepsy Behav, 5 Suppl 3, S33-41. Austin, J. K., Harezlak, J., Dunn, D. W., Huster, G. A., Rose, D. F., and Ambrosius, W. T. (2001). Behavior problems in children before first recognized seizures. Pediatrics, 107(1), 115-122. Austin, J. K., McBride, A. B., and Davis, H. W. (1984). Parental attitude and adjustment to childhood epilepsy. Nurs Res, 33(2), 92-96. Austin, J. K., and McDermott, N. (1988). Parental attitude and coping behaviors in families of children with epilepsy. J. Neurosci. Nurs, 20(3), 174-179. Austin, J. K., McNelis, A.M., Shore, C.P., Dunn, D.W. and Musick, B. (2002). A feasibility study of a family seizure management program: 'Be Seizure Smart'. The Journal of neuroscience nursing, 34(1), 30-37. Austin, J. K., Risinger, M. W., and Beckett, L. A. (1992). Correlates of behavior problems in children with epilepsy. Epilepsia, 33(6), 1115-1122. Austin, J. K., Smith, M. S., Risinger, M. W., and McNelis, A. M. (1994). Childhood epilepsy and asthma: comparison of quality of life. Epilepsia, 35(3), 608-615. Baker, G. A., Spector, S., McGrath, Y., and Soteriou, H. (2005). Impact of epilepsy in adolescence: a UK controlled study. Epilepsy Behav, 6(4), 556-562. Baki, O., Erdogan, A., Kantarci, O., Akisik, G., Kayaalp, L., and Yalcinkaya, C. (2004). Anxiety and depression in children with epilepsy and their mothers. Epilepsy Behav, 5(6), 958-964. Bleil, M. E., Ramesh, S., Miller, B. D., and Wood, B. L. (2000). The influence of parent-child relatedness on depressive symptoms in children with asthma: tests of moderator and mediator models. J. Pediatr Psychol, 25(7), 481-491. Brennan, P. A., Hammen, C., Andersen, M. J., Bor, W., Najman, J. M., and Williams, G. M. (2000). Chronicity, severity, and timing of maternal depressive symptoms: relationships with child outcomes at age 5. Dev. Psychol, 36(6), 759-766. Britner, P. A., Morog, M.C., Pianta, R.C. and Marvin, R.S. (2003). Stress and coping: a comparison of self-report measures of functioning in families of young children with cerebral palsy or no medical diagnosis. J. Child Fam. Stud, 12, 335-348. Burke, L. (2003). The impact of maternal depression on familial relationships. Int. Rev. Psychiatry, 15(3), 243-255. Caplan, R., Siddarth, P., Gurbani, S., Hanson, R., Sankar, R., and Shields, W. D. (2005). Depression and anxiety disorders in pediatric epilepsy. Epilepsia, 46(5), 720-730.

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Hartlage, L. C., Green, J. B., and Offutt, L. (1972). Dependency in epileptic children. Epilepsia, 13(1), 27-30. Hoare, P. (1984a). The development of psychiatric disorder among schoolchildren with epilepsy. Dev. Med. Child Neurol, 26(1), 3-13. Hoare, P. (1984b). Does illness foster dependency? A study of epileptic and diabetic children. Dev. Med. Child Neurol, 26(1), 20-24. Hoare, P. (1984c). Psychiatric disturbance in the families of epileptic children. Dev. Med. Child Neurol, 26(1), 14-19. Hoare, P. (1986). Adults' attitudes to children with epilepsy: the use of a visual analogue scale questionnaire. J. Psychosom. Res, 30(4), 471-479. Hoare, P. (1993). The quality of life of children with chronic epilepsy and their families. Seizure, 2(4), 269-275. Hoare, P., and Kerley, S. (1991). Psychosocial adjustment of children with chronic epilepsy and their families. Dev. Med. Child Neurol, 33(3), 201-215. Hoare, P., and Kerley, S. (1992). Helping parents and children with epilepsy cope successfully: the outcome of a group programme for parents. J. Psychosom. Res, 36(8), 759-767. Hoare, P., and Mann, H. (1994). Self-esteem and behavioural adjustment in children with epilepsy and children with diabetes. J. Psychosom. Res, 38(8), 859-869. Hoare, P., Mann, H., and Dunn, S. (2000). Parental perception of the quality of life among children with epilepsy or diabetes with a new assessment questionnaire. Qual. Life Res, 9(6), 637-644. Hoare, P., and Russell, M. (1995). The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Dev. Med. Child Neurol, 37(8), 689-696. Hodes, M., Garralda, M. E., Rose, G., and Schwartz, R. (1999). Maternal expressed emotion and adjustment in children with epilepsy. J. Child Psychol. Psychiatry, 40(7), 1083-1093. Hoie, B., Sommerfelt, K., Waaler, P. E., Alsaker, F. D., Skeidsvoll, H., and Mykletun, A. (2006). Psychosocial problems and seizure-related factors in children with epilepsy. Dev. Med. Child Neurol, 48(3), 213-219. Jacoby, A., and Austin, J. K. (2007). Social stigma for adults and children with epilepsy. Epilepsia, 48 Suppl 9, 6-9. Kim, W. J. (1991). Psychiatric aspects of epileptic children and adolescents. J. Am. Acad. Child Adolesc. Psychiatry, 30(6), 874-886. Lavigne, J. V., and Faier-Routman, J. (1993). Correlates of psychological adjustment to pediatric physical disorders: a meta-analytic review and comparison with existing models. J. Dev. Behav. Pediatr, 14(2), 117-123. Lewis, M. A., Salas, I., de la Sota, A., Chiofalo, N., and Leake, B. (1990). Randomized trial of a program to enhance the competencies of children with epilepsy. Epilepsia, 31(1), 101-109. Li, X., Sundquist, J., and Sundquist, K. (2008). Socioeconomic and occupational risk factors for epilepsy: a nationwide epidemiological study in Sweden. Seizure, 17(3), 254-260. Long, C. G., and Moore, J. R. (1979). Parental expectations for their epileptic children. J. Child Psychol. Psychiatry, 20(4), 299-312. Lothman, D. J., and Pianta, R. C. (1993). Role of child-mother interaction in predicting competence of children with epilepsy. Epilepsia, 34(4), 658-669.

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Miller, V., Palermo, T. M., and Grewe, S. D. (2003). Quality of life in pediatric epilepsy: demographic and disease-related predictors and comparison with healthy controls. Epilepsy Behav, 4(1), 36-42. Minuchin, S., Baker, L., Rosman, B. L., Liebman, R., Milman, L., and Todd, T. C. (1975). A conceptual model of psychosomatic illness in children. Family organization and family therapy. Arch. Gen. Psychiatry, 32(8), 1031-1038. Nicholas, K. K., and Pianta, R. C. (1994). Mother–child interactions and seizure control: Relations with behavior problems in children with epilepsy. Journal of Epilepsy, 7(2), 102-107. Otero, S. (2009). Psychopathology and psychological adjustment in children and adolescents with epilepsy. World J. Pediatr, 5(1), 12-17. Otero, S., and Hodes, M. (2000). Maternal expressed emotion and treatment compliance of children with epilepsy. Dev. Med. Child Neurol, 42(9), 604-608. Ott, D., Caplan, R., Guthrie, D., Siddarth, P., Komo, S., Shields, W. D., Sankar, R., Kornblum, H. and Chayasirisobhon, S. (2001). Measures of psychopathology in children with complex partial seizures and primary generalized epilepsy with absence. J. Am. Acad. Child Adolesc. Psychiatry, 40(8), 907-914. Ott, D., Siddarth, P., Gurbani, S., Koh, S., Tournay, A., Shields, W. D. and Caplan, R. (2003). Behavioral disorders in pediatric epilepsy: unmet psychiatric need. Epilepsia, 44(4), 591597. Pianta, R. C., and Lothman, D. J. (1994). Predicting behavior problems in children with epilepsy: child factors, disease factors, family stress, and child-mother interaction. Child Dev, 65(5), 1415-1428. Plioplys, S., Dunn, D. W., and Caplan, R. (2007). 10-year research update review: psychiatric problems in children with epilepsy. J. Am. Acad. Child Adolesc. Psychiatry, 46(11), 1389-1402. Powers, S. W., Byars, K. C., Mitchell, M. J., Patton, S. R., Standiford, D. A., and Dolan, L. M. (2002). Parent report of mealtime behavior and parenting stress in young children with type 1 diabetes and in healthy control subjects. Diabetes Care, 25(2), 313-318. Rantanen, K., Timonen, S., Hagstrom, K., Hamalainen, P., Eriksson, K., and Nieminen, P. (2009). Social competence of preschool children with epilepsy. Epilepsy Behav, 14(2), 338-343. Raty, L. K., Wilde Larsson, B. M., and Soderfeldt, B. A. (2003). Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls. J. Adolesc. Health, 33(4), 252-258. Ritchie, K. (1981). Research note: interaction in the families of epileptic children. J. Child Psychol. Psychiatry, 22(1), 65-71. Rodenburg, R., Marie Meijer, A., Dekovic, M., and Aldenkamp, A. P. (2006). Family predictors of psychopathology in children with epilepsy. Epilepsia, 47(3), 601-614. Rodenburg, R., Meijer, A. M., Dekovic, M., and Aldenkamp, A. P. (2005). Family factors and psychopathology in children with epilepsy: a literature review. Epilepsy Behav, 6(4), 488-503. Rodenburg, R., Stams, G. J., Meijer, A. M., Aldenkamp, A. P., and Dekovic, M. (2005). Psychopathology in children with epilepsy: a meta-analysis. J. Pediatr Psychol, 30(6), 453-468.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter XIV

Perspectives on Depression in Epilepsy Adrian Palomino 1and Alexander W. Thompson 2

1. University of California at Davis, Department of Internal Medicine 2. Department of Psychiatry, Texas A & M College of Medicine; Scott and White Hospital, Temple, TX

Abstract Depression in people with epilepsy is a public health problem. Depression is a major determinant of quality of life, leads to less effective self care and medication noncompliance, and is a risk factor for suicide. Depression is common in epilepsy and is often unrecognized and untreated. Viewed entirely from a disease perspective, one solution to the problem of depression in epilepsy entails patient diagnosis using DSM-IVTR criteria and biologically based treatment with antidepressant medication. Unfortunately, a pure disease view of depression in epilepsy ignores major factors that may contribute to low mood. An often used model for understanding psychiatric disorders is the ―biopsychosocial‖ model described by Engel in the 1970‘s. Criticisms of the biopsychosocial model include the argument that it is not a model in the scientific sense of the term and is not clearly defined either by Engel or modern psychiatry. As a method of clinical formulation, then, it may fall short as a way of guiding treatment considering the many complex, interconnected factors (e.g. seizures, seizure medications, cognitive dysfunction, inability to drive, limited physical activity, professional discrimination, and social stigma) present in a depressed person with epilepsy. In this chapter, in addition to discussing the biopsychosocial model, we discuss another approach for understanding mental disorders and guiding treatment decisions. This four perspective approach describes a method of organizing clinical information from disease, dimensional, behavioral, and life story perspectives. Each perspective is supported by its  Correspondence: Alexander W. Thompson MD., Texas AandM College of Medicine, Scott and White Hospital, STC-1, 2401 S. 31st St. Temple, TX 76508. 254-724-3214 (o) 254-724-3219 (f). E:mail: [email protected].

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Adrian Palomino and Alexander W. Thompson own reasoning and treatment decisions differ depending on the perspective from which a problem is viewed. Developing a clear psychiatric formulation to guide the treatment of a person with a mental disorder, such as a depressed person with epilepsy, requires the consideration of each perspective.

Introduction Consideration of the social aspects of epilepsy warrants close attention to the role of depressed mood in those suffering from epilepsy. Nearly 2500 years ago, Hippocrates commented on the relationship between melancholia and epilepsy. Today, the complex relationship between the two conditions remains a rich area of research as well as a commonplace co-morbidity in psychiatry and neurology clinics alike. Depression is the most common psychiatric disorder in persons with epilepsy (PWE), with an estimated prevalence of between 20-55% in those with uncontrolled seizures and 39% in those with controlled epilepsy (Kanner 2003; Barry et al. 2007). Depression in epilepsy is a major determinant of quality of life (Boylan et al. 2004) and may lead to less effective self-care and medication noncompliance (Gehi et al. 2005). PWE have a rate of suicide higher than the general population (Jones et al. 2003; Christensen et al. 2007), and PWE who complete suicide have higher rates of co-morbid psychiatric illness (Nilsson et al. 2002; Jones et al. 2003), making depression a risk factor for suicide in PWE. Interestingly, research suggests that depression may be a risk factor for developing epilepsy (Hesdorffer et al. 2000). From an economic view, PWE and co-morbid depression have greater health resource utilization than non-depressed PWE (Cramer et al. 2004). In the context of a wordwide epilepsy population of at least 50 million, depression in those with epilepsy is a public health problem. Unfortunately, most people with epilepsy and depression do not have the depression diagnosed or adequately treated (O'Donoghue et al. 1999; Wiegartz et al. 1999; Boylan et al. 2004; Jones et al. 2005). Research details a complex array of factors associated with depression in epilepsy, including being male (Kogeorgos et al. 1982; Altshuler et al. 1990; Septien et al. 1993), having a low IQ or learning disability (Lund 1985), having an ―external locus of control‖ (Hermann et al. 1989), having a family history of major depression (Hermann et al. 1989), and being less physically active (Roth et al. 1994; McAuley et al. 2001). Patients with epilepsy experience stigma in social and vocational areas of life (Jacoby et al. 2007). Research has described stigma as a risk factor for the development of depression (Hermann et al. 1990). There are factors directly related to the epilepsy that are also associated with the development or presence of depression. For example, patients with seizures stemming from a left-sided focus may be at higher risk for depression (Mendez et al. 1986; Altshuler et al. 1990; Indaco et al. 1992; Septien et al. 1993). It is also apparent that those with more frequent seizures appear more likely to develop depression (Trostle et al. 1989; Roth et al. 1994). People with epilepsy who need to take more than one anti-epileptic drug (AED) seem more likely to develop depression and there is an association with certain AEDs such as phenobarbital and the development of a depressive disorder (Barry et al. 2007). Evaluating and treating depression in the complex environment of epilepsy is an intellectual and clinical challenge. Psychiatry as a field has addressed complex issues by embracing a ―biopsychosocial‖ model of understanding mental disorders. For reasons we will

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address, this model has been described as clinically unproductive and encouraging of an eclecticism that does not provide intellectual clarity or advance clinical care. In addition to discussing the biopsychosocial model, we will discuss another approach for understanding mental disorders and guiding treatment decisions. ―Perspectives on Depression in Epilepsy‖ is a direct reference to the text, The Perspectives of Psychiatry, written by Paul McHugh and Philip Slavney (McHugh et al. 1998). This text outlines four perspectives that should be considered when addressing patients with mental disorders: disease, dimension, behavior, and life story. One perspective is not sufficient, nor will it ever be sufficient, for understanding and guiding the treatment of psychiatric disorders. No perspective is superior. Developing a clear psychiatric formulation to guide the treatment of a person with a mental disorder, such as a depressed person with epilepsy, requires the consideration of each perspective.

The Biopsychosocial Model The term ―biopsychosocial,‖ although most commonly associated with George Engel, was first used by Roy Grinker in the 1950s. Grinker, trained as a neurologist and psychiatrist, was also one of Freud‘s last analysands. Reacting to the dominant psychoanalytic orthodoxy of the time, he proposed the term to emphasize the importance of biologic concerns in an era when most psychiatrists were focused on the psychological (Ghaemi 2010). George Engel, in contrast, was an internist who had also trained in psychoanalysis. Engel sensed a need to interject ―human factors‖ into the rigid, reductionist scientific methodology of biologically-based medicine (McLaren 1998). He adopted von Bertalanffy‘s General Systems Theory (GST), which theoretically allowed for scientific exploration across different levels of hierarchy. Using GST as his theoretical backbone, he proposed a biopsychosocial model that would enable ―the physician to extend application of the scientific method to aspects of everyday practice and patient care which was not deemed accessible to the scientific approach‖ (McLaren 1998). In his seminal 1977 paper, Engel concluded that ―the proposed biopsychosocial model provides a blueprint for research, a framework for teaching, and a design for action in the real world of health care‖ (Engel 1977). In a later paper, Engel applied his model to the case of a man with myocardial infarction. In neither paper did Engle describe the applicability or relevance of his model towards mental illness; rather, its applicability was assumed. There are several weaknesses to the biopsychosocial model as put forth by Engel. First, as convincingly argued by McLaren, it is not a model at all (McLaren 1998). A model allows the empirical testing of a theory. A theory, meanwhile, has predictive value. Engel‘s model, in contrast, is based not on theory but on an intuitively pleasing idea: in the setting of illness, the biologic, psychological, and social concerns interact and are relevant. As to how and when they interact, the model is silent. Relatedly, it makes no predictive statements. Second, the ―model‖ gives no guidance on the relative importance of the three tiers, the biologic, social, and psychological. The result, as aptly described by Ghaemi (2010), is a devolution into eclecticism, where clinicians practice according to their personal biases and prejudices. Third, in the three decades or so since its widespread adoption by American psychiatry, there is little or no evidence to suggest that it results in superior treatment outcomes compared to

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biologic or psychotherapeutic reductionism, or other methods of conceptualizing psychiatric care (Ghaemi 2010). Other authors, including McHugh and Slavney (1998), and Ghaemi (2010), have proposed alternatives to the biopsychosocial model. McHugh and Slavney, in particular, have provided a detailed description of a psychiatric method which they term the ―perspectives‖ and describe in their text, The Perspectives of Psychiatry (McHugh et al. 1998).

The Perspectives on Depression in Epilepsy Disease. The disease perspective assumes that certain psychiatric disorders (e.g. melancholic major depression, bipolar disorder, schizophrenia, panic disorder, and obsessive compulsive disorder) result from pathologic cerebral physiology. It is explicitly biomedical. The disease perspective views depression (diagnosed by clinical interview identifying well known cardinal features) as a manifestation of underlying abnormalities in the brain (Gilliam et al. 2004). It aims for cure much like the eradication of a staphylococcus infection or the removal of an inflamed appendix. A clinical example would be the patient with no medical, personality, or substance use disorder who develops melancholia (now called a major depressive episode). He may note the development of low mood, pathological guilt, low self attitude, and vegetative changes such as loss of appetites for food and sex and very poor sleep and energy. This syndrome of melancholia, never present before, may present fairly quickly with no obvious precipitants and result in significant social and occupational dysfunction. Treatment is initiated with an antidepressant with full recovery in four to six weeks. Another example is the development of catatonia as part of a mood disorder that is resolved completely with a course of electroconvulsive therapy. One major difficulty facing psychiatry (and a battle cry for those opposed to psychiatry in general) is the lack of clear-cut pathologic neurochemistry. Regardless, the disease model is an extremely useful perspective when addressing psychiatric problems in those with neurologic disorders like epilepsy or Parkinson‘s Disease. When neurologic injury is present, the signs and symptoms of psychiatric disorder may be so clearly related to the neurologic dysfunction that the suggestion of any other cause makes little sense. Studies describing biological linkages between epilepsy and depression support a disease perspective. A history of major depression is associated with an increased risk for developing unprovoked seizures, suggesting a common underlying neurologic susceptibility (Hesdorffer et al. 2000). In animal models of epilepsy, deficits in both 5-hydroxy tryptophan (5-HT, serotonin) and noradrenaline have been implicated. Rat data showed a positive correlation between noradrenaline and 5-HT deficits and seizure severity (Garcia-Morales et al. 2008). PET imaging has demonstrated 5-HT receptor binding abnormalities in regions distinct from seizure loci (Gilliam 2005). Biological treatments have been found effective in the treatment of depression in people with epilepsy. Some evidence supports the use of selective serotonin reuptake inhibitors in the treatment of depression in epilepsy and suggests such treatment may decrease seizure frequency (Kanner et al. 2000; Kondziella et al. 2009).

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Dimension. The dimensional perspective addresses intelligence and personality. This perspective assumes that certain disorders of mental life may stem from someone‘s underlying cognitive capacity or character traits, features that exist on a dimension for all human beings and have been present for the majority of adult life. Intelligence and other cognitive characteristics can be measured with neuropsychological testing. Personality features such as neuroticism, extraversion, and psychoticism (the dimensions of personality described by Hans Eysenck in the 1940s (Eysenck 1998)) can be determined through detailed interview and objective personality assessment tools. An example of a problem requiring a dimensional perspective is the presentation of anxiety, low mood, and self loathing in a young man with borderline intellectual functioning who is failing in academic pursuits that exceed his capabilities. Another example is the presentation of many years of low mood and mood instability in a woman with a history of sexual abuse, eating disorder, and self injury in the context of relationship stress. In both of these cases, there are mental symptoms present and the potential for psychiatric intervention. But, it should be apparent that the presumption of a neurochemical ―broken part‖ or hope for cure with medication is not the perspective to take when formulating a care plan. A conceptual model of dimensional disorders is: potential, provocation, response. A person‘s dimensional characteristics represent potential, while life events provoke affective or behavioral responses. When assisting a person with dimensional disorders, the goal is guidance toward productive ways of understanding and responding to inevitable life stress. Medications may be used in the management of dimensional disorders, but it is done with the goal alleviating symptoms rather than resolving the condition. A dimensional perspective can be very helpful when evaluating patients with epilepsy. Patients with epilepsy commonly experience cognitive problems that affect treatment compliance, work, and relationships. Long standing changes in personality are described in epilepsy and impact the way interpersonal problems and environmental stresses are handled. Research has shown that certain personality attributes may contribute to depression in a person with epilepsy. In a group of patients with poorly controlled temporal lobe epilepsy, Herman et al (1996) found a strong association between having a pessimistic attributional style and reporting depressive symptoms (Hermann et al. 1996). One study examined 85 adults who had a first seizure. Those reporting a more pervasive sense of losing control had a much greater need for psychological care (Velissaris et al. 2007). Wilson et al (2009) reported on the dimensional assessments of patients with intractable epilepsy. They noted that patients with the onset of epilepsy in adolescence had higher neuroticism in adulthood. Also, those with high neuroticism were more likely to report low mood (Wilson et al. 2009). Behavior. Behaviors are goal-directed actions such as sleeping, eating, having sex, taking medication, drinking beer, and mimicking illness. Disorders of behavior are marked by what a patient does compared to the disease perspective examining what a patient has, or the dimensional perspective addressing who a person is. A classic motivated behavioral disorder is the repeated consumption of alcohol to the point of complete personal, social, physical, and mental destruction. The motivated portion of a motivated behavioral disorder refers to the internal drive (e.g. craving a drink after work) that becomes present or may have always seemed present. In response to the motivation, a person chooses to engage in a behavior (drinking to intoxication) that may or may not be reinforced by a combination of internal and external responses. There is conditioned learning in this setting and a cycle of behavior continues that can result in significant problems. No doubt, there are biological factors

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playing a role in such disorders and these are addressed with biological treatments (like medications that reduce the craving for alcohol or tobacco). But, that does not define a disorder as a disease. Treating a behavioral disorder may involve addressing the internal motivation, the choice or behavior itself, or the social factors perpetuating the behavior. The goal of treatment is to help the patient understand the behavioral problem, stop the behavior, and find reinforcements to encourage the continued avoidance of the behavior. While being depressed involves behavioral changes (e.g. eating, sleeping, and activity change) major depression is not a behavioral disorder, per se. Two important behaviors to consider in a depressed person with epilepsy are substance use and medication compliance. One recent study sought to determine the lifetime risk of seizures in those abusing substances, primarily alcohol and opiates. 626 patients were studied, mostly men. About 9% of the subjects reported seizures and 97% of those who reported a seizure were also dependent on tobacco (Mattoo et al. 2009). While we did not find specific studies addressing the relationship of comorbid substance abuse, depression, and epilepsy, it is well known that substance abuse is often associated with mood disorders and may be a risk factor in the development of depression. People with epilepsy are often noncompliant with antiepileptic drugs (Leppik 1990). Such noncompliance contributes to ongoing epilepsy which is a well described risk factor for depression (Roth et al. 1994; Thompson et al. 2009). In other chronic medical conditions, patients with depression are less compliant with necessary treatments (Gehi et al. 2005). It is likely depression has a similar impact on those with epilepsy. Life Story. The life story perspective may be the most straightforward to grasp. Distressing mood states may be understandable responses given the story of one‘s life. A patient example is illustrative. A 28 year old man with no significant prior mood problems reported depression, when, after an elaborate work-up and surgery to remove a temporal lobe lesion in a hope to cure his partial epilepsy, he started to seize again. Prior to the surgery, he described his hopes for life after epilepsy. While he reported depression, other cardinal features of major depression were not present. In this case, it is not reasonable to suggest that his depression is the expression of a depressive disease. Such a view ignores the experience he has been through and the opportunity to better understand better his hopes, his demoralization, and the ways to move on productively. The life story perspective intimately connects with the other perspectives as a person‘s response to life events (a response that may involve affective changes and abnormal behaviors) depends on the presence of underlying diseases, intelligence, and personality structure. A seizure and epilepsy may bring with them a host of unwanted and un-expected lifestyle changes, including a moratorium on driving and potential restrictions on work, family, and recreational activities (Velissaris et al. 2007). Numerous authors have found that PWE experience more social and environmental problems than the general population. Social isolation, reduced marriageablity, less education, more unemployment and/or underemployment are common (Bandstra et al. 2008). In a survey of 81 adults, the chief concerns about living with epilepsy were driving, independence, work, and embarrassment (Gilliam et al. 1997). Social isolation in PWE is common and multifactorial in origin, stemming from fear of having a seizure in public, reduced opportunities for social interaction in the traditional areas of school and work, inability to drive, and fear of social stigma (McCagh et al. 2009). In a

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prospective trial of 319 adults with epilepsy, a low level of social support was predictive of depressive symptoms along with being unemployed and having felt stigma (Reisinger et al. 2009). Seizure frequency is positively associated with marital status, with increasing seizure frequency associated with a greater likelihood of being divorced or single. Earlier age of onset of epilepsy is positively correlated with not being married (McCagh et al. 2009). Stigma may be either enacted or felt. Enacted stigma encompasses specific instances of discrimination due to having a seizure disorder. It may be overt, such as discrimination in the workplace or job loss, or more subtle, such as social rejection. Felt, or perceived, stigma, is an individual‘s subjective sense of stigmatization, and may be experienced in the absense of enacted stigma (Bandstra et al. 2008). Over sixty percent of PWE experiencing frequent seizures report feeling stigmatized by their disorder (McCagh et al. 2009), and seizure frequency is positively associated with felt stigmatization (Bandstra et al. 2008). In a small study, a psychoeducational CBT-intervention resulted in decreased depressive symptoms and increased psychosocial functioning (Davis et al. 1984). The literature on coping with epilepsy strongly suggests that the engagement-type coping strategies of problem solving and cognitive restructuring (both depicting active, purposeful planning and dealing with stressful situations) were associated with better psychosocial adaptation (Livneh et al. 2001).

Concluding Remarks The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) (American Psychiatric Association 2000) describes specific criteria and time requirements for making psychiatric diagnoses. For the diagnosis of a major depressive disorder, it indicates there must be five of nine symptoms (depressed mood, anhedonia, guilt, thoughts of suicide, sleep disturbance, appetite disturbance, low energy, feeling physically agitated or slowed down, and trouble concentrating) present for most of the time over the past two weeks with at least one symptom being depressed mood or anhedonia. The DSM adds that the disturbance cannot be accounted for by another psychiatric disorder (like bipolar disorder) or the effects of a medical condition, prescribed medication, or abusable substance. By detailing this structure for diagnosing depression, the DSM has operationalized criteria for a mood disease, major depression. A major problem, however, is that the DSM-IV criteria for disorders such as major depression simply are not that reliable or valid (Taylor et al. 2009). This becomes apparent in people with neurological disorders like epilepsy where many of the specified symptoms may not be present (despite the presence of a real mood disorder) or many symptoms (like trouble with sleep, energy, or concentration) may be the results of the underlying condition or medication rather than a mood disorder. Many patients will present with an atypical clinical picture that fails to meet DSM-IV criteria for major depression (Kanner 2003; Gilliam 2005). Kraeplin, writing in the 1920‘s, described an intermittent and pleomorphic dysphoric disorder. This condition has been referred to as the ―interictal dysphoric disorder‖ and is characterized by symptomatic periods of depressed mood, irritability, anxiety, phobic fear, anergia, pain, and occasional euphoric mood (Blumer et al. 2004). Symptomatic periods may last from hours to days, followed by a similar period

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free of symptoms. Kanner (2003) notes that depressive symptoms may also mimic a dysthymic disorder, though the intermittent, interrupted frequency of the symptoms confounds a diagnosis based upon DSM-IV criteria (Kanner 2003). Other authors have reported large numbers of patients having atypical or ―not otherwise specified‖ mood disorders (Gilliam 2005). The point of this is that strict disease reasoning based on DSM-IV criteria is not the most effective way of identifying depressive disorders in people with epilepsy. Formulation and Treatment. A major depressive disorder should be diagnosed in a person with epilepsy when there is a discrete change in mood combined with change in self attitude, psychomotor changes, and vegetative disturbance (sleeping, eating, and sexual activity changes). This diagnosis must be part of a formulation that gives consideration to details of the patient‘s personality and intelligence, behaviors, and life story. Each area must be systematically assessed in a detailed interview; only then can appropriate intervention proceed. When it is apparent that a depressive mood disease is the major factor present, a cut and dry biological treatment approach may suffice. In most other situations, psychotherapy and behavioral interventions will be necessary to help guide, redirect, and support the person suffering from epilepsy and depression.

References Altshuler, L. L., O. Devinsky, et al. (1990). "Depression, anxiety, and temporal lobe epilepsy. Laterality of focus and symptoms." Arch. Neurol 47(3): 284-8. American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision. Washington, DC, American Psychiatric Association. Bandstra, N. F., C. S. Camfield, et al. (2008). "Stigma of epilepsy." Can. J. Neurol. Sci. 35(4): 436-40. Barry, J. J., A. Lembke, et al. (2007). Affective Disorders in Epilepsy. Psychiatric Issues in Epilepsy, Second Edition. A. Ettinger and A. Kanner. Philadelphia, PA, Lippincott Williams and Wilkins: 203-247. Blumer, D., G. Montouris, et al. (2004). "The interictal dysphoric disorder: recognition, pathogenesis, and treatment of the major psychiatric disorder of epilepsy." Epilepsy Behav. 5(6): 826-40. Boylan, L. S., L. A. Flint, et al. (2004). "Depression but not seizure frequency predicts quality of life in treatment-resistant epilepsy." Neurology 62(2): 258-61. Christensen, J., M. Vestergaard, et al. (2007). "Epilepsy and risk of suicide: a populationbased case-control study." Lancet Neurol 6(8): 693-8. Cramer, J. A., D. Blum, et al. (2004). "The impact of comorbid depression on health resource utilization in a community sample of people with epilepsy." Epilepsy Behav. 5(3): 33742. Davis, G. R., H. E. Armstrong, Jr., et al. (1984). "Cognitive-behavioral treatment of depressed affect among epileptics: preliminary findings." J. Clin. Psychol. 40(4): 930-5. Engel, G. L. (1977). "The need for a new medical model: a challenge for biomedicine." Science 196(4286): 129-36.

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Eysenck, H. (1998). Dimensions of Personality. New Brunswick, Transaction Publishers. Garcia-Morales, I., P. de la Pena Mayor, et al. (2008). "Psychiatric comorbidities in epilepsy: identification and treatment." Neurologist 14(6 Suppl 1): S15-25. Gehi, A., D. Haas, et al. (2005). "Depression and medication adherence in outpatients with coronary heart disease: findings from the Heart and Soul Study." Arch. Intern. Med. 165(21): 2508-13. Ghaemi, S. N. (2010). The Rise and Fall of the Biopsychosocial Model. Baltimore, The Johns Hopkins University Press. Gilliam, F., R. Kuzniecky, et al. (1997). "Patient-validated content of epilepsy-specific quality-of-life measurement." Epilepsia 38(2): 233-6. Gilliam, F. G. (2005). "Diagnosis and treatment of mood disorders in persons with epilepsy." Curr. Opin. Neurol. 18(2): 129-33. Gilliam, F. G., J. Santos, et al. (2004). "Depression in epilepsy: ignoring clinical expression of neuronal network dysfunction?" Epilepsia 45 Suppl 2: 28-33. Hermann, B. P., M. R. Trenerry, et al. (1996). "Learned helplessness, attributional style, and depression in epilepsy. Bozeman Epilepsy Surgery Consortium." Epilepsia 37(7): 680-6. Hermann, B. P. and S. Whitman (1989). "Psychosocial predictors of depression in epilepsy." Journal of Epilepsy(2): 231-7. Hermann, B. P., S. Whitman, et al. (1990). "Psychosocial predictors of psychopathology in epilepsy." Br. J. Psychiatry 156: 98-105. Hermann, B. P. and A. R. Wyler (1989). "Depression, locus of control, and the effects of epilepsy surgery." Epilepsia 30(3): 332-8. Hesdorffer, D. C., W. A. Hauser, et al. (2000). "Major depression is a risk factor for seizures in older adults." Ann. Neurol. 47(2): 246-9. Indaco, A., P. B. Carrieri, et al. (1992). "Interictal depression in epilepsy." Epilepsy Res. 12(1): 45-50. Jacoby, A. and J. K. Austin (2007). "Social stigma for adults and children with epilepsy." Epilepsia 48 Suppl 9: 6-9. Jones, J. E., B. P. Hermann, et al. (2005). "Clinical assessment of Axis I psychiatric morbidity in chronic epilepsy: a multicenter investigation." J. Neuropsychiatry Clin. Neurosci. 17(2): 172-9. Jones, J. E., B. P. Hermann, et al. (2003). "Rates and risk factors for suicide, suicidal ideation, and suicide attempts in chronic epilepsy." Epilepsy Behav. 4 Suppl 3: S31-8. Kanner, A. M. (2003). "Depression in epilepsy: prevalence, clinical semiology, pathogenic mechanisms, and treatment." Biol. Psychiatry 54(3): 388-98. Kanner, A. M., A. M. Kozak, et al. (2000). "The Use of Sertraline in Patients with Epilepsy: Is It Safe?" Epilepsy Behav. 1(2): 100-105. Kogeorgos, J., P. Fonagy, et al. (1982). "Psychiatric symptom patterns of chronic epileptics attending a neurological clinic: a controlled investigation." Br. J. Psychiatry 140: 236-43. Kondziella, D. and F. Asztely (2009). "Don't be afraid to treat depression in patients with epilepsy!" Acta Neurol. Scand. 119(2): 75-80. Leppik, I. E. (1990). "How to get patients with epilepsy to take their medication. The problem of noncompliance." Postgrad. Med. 88(1): 253-6. Livneh, H., L. M. Wilson, et al. (2001). "Psychosocial Adaptation to Epilepsy: The Role of Coping Strategies." Epilepsy Behav. 2(6): 533-544.

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Lund, J. (1985). "Epilepsy and psychiatric disorder in the mentally retarded adult." Acta Psychiatr Scand. 72(6): 557-62. Mattoo, S. K., S. M. Singh, et al. (2009). "Prevalence and correlates of epileptic seizure in substance-abusing subjects." Psychiatry Clin. Neurosci. 63(4): 580-2. McAuley, J. W., L. Long, et al. (2001). "A Prospective Evaluation of the Effects of a 12Week Outpatient Exercise Program on Clinical and Behavioral Outcomes in Patients with Epilepsy." Epilepsy Behav. 2(6): 592-600. McCagh, J., J. E. Fisk, et al. (2009). "Epilepsy, psychosocial and cognitive functioning." Epilepsy Res. 86(1): 1-14. McHugh, P. R. and P. R. Slavney (1998). The Perspectives of Psychiatry. Baltimore, The Johns Hopkins University Press. McLaren, N. (1998). "A critical review of the biopsychosocial model." Aust. N. Z. J. Psychiatry 32(1): 86-92; discussion 93-6. Mendez, M. F., J. L. Cummings, et al. (1986). "Depression in epilepsy. Significance and phenomenology." Arch. Neurol. 43(8): 766-70. Nilsson, L., A. Ahlbom, et al. (2002). "Risk factors for suicide in epilepsy: a case control study." Epilepsia 43(6): 644-51. O'Donoghue, M. F., D. M. Goodridge, et al. (1999). "Assessing the psychosocial consequences of epilepsy: a community-based study." Br. J. Gen. Pract. 49(440): 211-4. Reisinger, E. L. and C. DiIorio (2009). "Individual, seizure-related, and psychosocial predictors of depressive symptoms among people with epilepsy over six months." Epilepsy Behav. 15(2): 196-201. Roth, D. L., K. T. Goode, et al. (1994). "Physical exercise, stressful life experience, and depression in adults with epilepsy." Epilepsia 35(6): 1248-55. Septien, L., M. Giroud, et al. (1993). "Depression and partial epilepsy: relevance of laterality of the epileptic focus." Neurol. Res. 15(2): 136-8. Septien, L., P. Gras, et al. (1993). "Depression and temporal epilepsy. The possible role of laterality of the epileptic foci and of gender." Neurophysiol. Clin. 23(4): 327-36. Taylor, M. A. and N. A. Vaidya (2009). Beyond the DSM and ICD. Descriptive Psychopathology. Cambridge, Cambridge University Press: 3-21. Thompson, A. W., J. W. Miller, et al. (2009). "Sociodemographic and clinical factors associated with depression in epilepsy." Epilepsy Behav. 14(4): 655-60. Trostle, J. A., W. A. Hauser, et al. (1989). "Psychologic and social adjustment to epilepsy in Rochester, Minnesota." Neurology 39(5): 633-7. Velissaris, S. L., S. J. Wilson, et al. (2007). "The psychological impact of a newly diagnosed seizure: losing and restoring perceived control." Epilepsy Behav. 10(2): 223-33. Wiegartz, P., M. Seidenberg, et al. (1999). "Co-morbid psychiatric disorder in chronic epilepsy: recognition and etiology of depression." Neurology 53(5 Suppl 2): S3-8. Wilson, S. J., J. M. Wrench, et al. (2009). "Personality development in the context of intractable epilepsy." Arch. Neurol. 66(1): 68-72.

In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter XV

Depression in People with Epilepsy Elizabeth Reisinger Walker and Colleen DiIorio Department of Behavioral Science and Health Education, Emory University, Atalanta, USA

Abstract Depression is the most frequent psychiatric disorder associated with epilepsy; however it is often under-diagnosed and under-treated. A growing number of investigators have examined the factors associated with depression among people with epilepsy and established the negative effect of depression on quality of life. Thus far, less attention has been paid to the barriers and facilitators for the treatment of depression among people with epilepsy. Individual, provider and system level factors can contribute to the recognition of depression and its treatment. Elucidation of these factors for people with epilepsy is necessary to inform the development of effective interventions to ultimately reduce the burden of depression in this population. In this chapter, we examine the literature on depression and epilepsy including factors influencing the diagnosis and treatment of depression, barriers to treatment, and approaches for treating depression. We will conclude with proposed avenues for future research.

 Correspondence: Professor Collen DiIorio PhD, RN, FAAN, Department of Behavioral Science and Health Education, Rollins School of Public Health, Emory University, 1518 Clifton Road, NE, Atlanta, GA, USA. Tele: 404-727-8741, Fax: 404-727-1369. Email: [email protected].

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Introduction Depression is the most frequent psychiatric disorder associated with epilepsy; however it is often under-diagnosed and under-treated. A growing number of investigators have examined the factors associated with depression among people with epilepsy and established the negative effect of depression on quality of life. Thus far, less attention has been paid to the barriers and facilitators for treatment of depression among people with epilepsy. Individual, provider, and system level factors can contribute to the recognition of depression and its treatment. Elucidation of these factors for people with epilepsy is necessary to inform the development of effective interventions to ultimately reduce the burden of depression in this population. In this chapter, we examine the literature on depression and epilepsy including the factors influencing the diagnosis and treatment of depression, barriers to treatment, and approaches for treating depression. We will conclude with proposed avenues for future research.

Depression Depression affects a significant portion of the world‘s population. Currently, unipolar depressive disorder is the fourth leading cause of disease burden in the world, representing 4.4% of disability adjusted life years or years living with a disability (Ustun et al, 2004). Hasin and colleagues (2005) reported that lifetime prevalence (the number of individuals, at assessment, who experienced depression, compared to the total number of individuals in that population) of major depressive disorder (MDD) ranges from 1.5% to 19%, with a mean of 8.8% across 11 countries. The lifetime prevalence in the United States and European countries is at the higher end of the continuum ranging from 13% to 19% (Hasin, et al., 2005). Lower lifetime prevalence rates are reported in Taiwan (1.5%), Korea (2.9%; Weissman, et al., 1996), Chile (9.7%; Vicente, et al., 2006), and South Africa (9.7%; Tomlinson et al, 2009). Comparisons of depression prevalence across nations, particularly developing countries, is often difficult because of the lack of nationally representative epidemiologic studies (Tomlinson, et al., 2009).

Etiology The etiology of depression is not totally understood. However, most clinicians and researchers believe that a combination of genetic, physiologic, and environmental factors contribute to the onset of depression. Although no specific depression gene has been identified, evidence suggests that there may be a genetic component present in at least some cases of depression. For example, identical twins are more likely to share the diagnosis of depression than are fraternal twins (Sullivan et al., 2000), and family history of depression has been associated with severe postpartum disorder (Scrandis et al, 2007). Researchers believe that an imbalance in the production or uptake of neurotransmitters plays a role in depression. Neurotransmitters that have been studied in this regard include dopamine, gamma-aminobutyric acid (GABA) and serotonin. The serotonergic system has been the

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focus of significant study. An imbalance in serotonin levels in the brain due to low production or problems with receptor cells has been linked with changes in mood and symptoms of depression, and recently, Svenningsson and colleagues (2006) identified a serotonin transporter gene that is associated with depression-like states. Evidence for a physiologic component of depression is also based on descriptive studies of individuals with neurologic disorders. Major depression is common among men and women suffering strokes and those diagnosed with epilepsy, Huntington‘s and Parkinson‘s disease among others (Langlieb and DePaulo, 2008). Although the causal mechanism is currently not known, researchers suggest that changes in brain structure or neurotransmitter levels due to the chronic condition may contribute to depression (Swinkels et al., 2005). Life events that are considered stressful have been widely implicated as a precipitant of depression. Childhood abuse, maltreatment, loss, job-related stressors, and traumatic events can leave individuals vulnerable to subsequent depressive episodes. People perceive and interpret these and other stressors differently. For some people, persistent or chronic stress may increase the risk of developing mental distress, mood changes, or a major depressive episode. The risk can be moderated by supportive resources and coping skills.

Symptoms of Depression Symptoms of depression include sadness, diminished interest and pleasure in everyday events, changes in appetite, trouble sleeping, fatigue, feelings of worthlessness, and inability to concentrate (Mensah et al, 2006). Depressed individuals also report episodes of tearfulness or crying, weight gain or loss, low energy and productivity, restlessness or irritability, and in more severe cases, thoughts of death and suicide. To be diagnosed with MDD, a person must experience depressed mood and loss of interest or pleasure in daily activities for at least two weeks (American Psychiatric Association, 2000). Interestingly, most depressed individuals are likely to consult a doctor for medical complaints such as headaches, fatigue, pain, and gastrointestinal symptoms rather than for psychiatric symptoms. Medical symptoms without identified pathology often connote some degree of psychological distress (Seelig and Katon, 2008). Simon (1991) found that people who reported five or more unexplained symptoms were also found to have psychiatric disorders. The experience of depression can vary across different cultural contexts. Some cultures and languages do not have a conceptualization or term for depression (Lehti et al., 2009). In other societies, depression may not be as strongly associated with mood change as it is in Western medicine (Patel, 2001). For example, people may complain of nerves, discomfort, weakness, or pain rather than psychological distress (American Psychiatric Association, 2000; Kleinman, 2004). Additionally, prolonged episodes of grief or sadness may be considered to be depression by diagnostic standards, but represent a culturally appropriate response to the individual. Cultural context also impacts an individual‘s decision to seek treatment, perceptions on what type of treatment is appropriate, and interactions with health care providers (Kleinman, 2004).

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Outcomes Depression has a negative effect on nearly all aspects of life, including health, relationships, functioning, and overall quality of life (Strine, et al., 2009). Research shows that people who are diagnosed with depression are at a higher risk for chronic disease, disability and mortality (Barth et al, 2004; Cuijpers and Smit, 2002). In a comparison of nondisabled elderly individuals with and without depression, the depressed individuals were significantly more likely to develop a physical disability (Penninx et al, 1999). In a metaanalysis of depression and excess mortality, Cuijpers and Smit (2002) found that increased risk for disability exists even among people who exhibit subclinical forms of depression, as well as among those with MDD. The negative impact of depression in the work environment is greater than other types of chronic illnesses including cancer and heart disease. Persistent job-related stress and other life events can lead to depression among vulnerable workers. Depressed workers display a number of negative work habits compared to their nondepressed counterparts (Lerner and Henke, 2008). Depressed workers are more likely to complain of somatic symptoms such as headaches, pain and fatigue leading to a greater number of visits to the doctor and more sick days. During work hours, depressed workers demonstrate lower productivity (called presenteeism) due to these somatic complaints as well as and maybe more importantly the inability to concentrate and the loss of interest in work (Donohue and Pincus, 2007). Inattention leads to higher rates of occupational injuries among those who are depressed, and poor collegial relationships lead to less cooperation and more arguments. Workers, like others who are depressed, tend to self-medicate and may use more alcohol and drugs, a practice which compounds depression-related work site problems. Subsequently, depressed workers are more likely to lose their jobs and to remain unemployed compared to non-depressed colleagues. The impact of depression in the workplace, especially when combined with other chronic diseases, is extremely costly. Employers pay more in health care costs for employees with depression and other conditions compared to employees with medical conditions alone (Druss et al., 2000). People with depression and chronic disease report significantly more ambulatory and emergency room visits, days absent from work, and days spent in bed compared to people with chronic disease but no depression (Egede, 2007). Effective treatment of depression, however, can significantly improve employee productivity (Simon, et al., 2001). Depression also has a negative association with marital satisfaction and the quality of interpersonal relationships. People who are depressed tend to have relationships characterized by more negative interactions, including hostility and conflict, and fewer positive interactions compared to those who are non-depressed (Rehman et al., 2008; Zlotnick et al, 2000). Greater interpersonal difficulty is usually reported in relationships with spouses or partners than friends or strangers, possibly because intimate relationships involve closer and more frequent contact than other relationships (Zlotnick, et al., 2000). In a longitudinal study among people with renal disease and their spouses, Pruchno and colleagues (2009) showed that the depressive symptoms of both patients and spouses were associated with their marital satisfaction. They indicate that the relationship between depressive symptoms and marital satisfaction may be bidirectional (Pruchno, et al., 2009). The complex nature of this relationship is highlighted by the findings of Fincham and colleagues (1997) who found that depressive symptoms predict marital satisfaction in men, and marital satisfaction predicts depressive symptoms in women.

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Epilepsy and Depression Prevalence People with chronic conditions are at particular risk for depression, including people with epilepsy (Hermann et al., 2000; Kanner, 2003). Epilepsy is one of the most common neurological disorders, and is characterized by recurrent seizures caused by abnormal electrical activity in the brain (Centers for Disease Control and Prevention, 2007). An estimated 50 million people in the world are affected by epilepsy, 80% of whom live in developing countries. Prevalence rates of active epilepsy vary across countries, but generally fall between 5 and 10 cases per 1,000 people (Scott, Latoo, and Sander, 2001). Higher prevalence rates, which may include both active and inactive cases of epilepsy, have been reported in some areas, including Latin America (17.8/1,000; Burneo et al, 2005) and Africa (10-20/1,000; Diop et al, 2003). The burden of epilepsy is felt by both individuals with the condition and society as a whole. Although many people can control their seizures with antiepileptic medication, at least 30% of people do not respond to treatment (Centers for Disease Control and Prevention, 2007). In developing countries, people with epilepsy often have difficulties receiving adequate treatment and obtaining needed antiepileptic medication (Scott, et al., 2001). Individuals with epilepsy report lower educational attainment, greater activity restriction, lower quality of life and increased healthcare service use compared to the general population (Wiebe et al, 1999). Adults with epilepsy report more mental, physical, and overall unhealthy days than those without epilepsy (Centers for Disease Control and Prevention, 2005; Kobau, et al., 2004). Also, 64% of people with active epilepsy report some form of disability, or limitation in their activities, compared with 18% of the general population (Centers for Disease Control and Prevention, 2005). The impact on society is reflected in the estimate that, in the United States, $15.5 billion are lost each year in medical costs and reduced earnings and productivity due to epilepsy (Centers for Disease Control and Prevention, 2007).

Chronic Disease Depression is often associated with chronic diseases and is the most common psychiatric disorder associated with epilepsy (Barry and Jones, 2005; Boylan, et al., 2004; Jones et al., 2005). The lifetime rate of depression among people with epilepsy is estimated to be around 30%, which is elevated compared to the general population (Hermann, et al., 2000). In addition to a high prevalence of depression among persons with epilepsy, the suicide rate of people with epilepsy is about 11.5%, which is ten times higher than among the general population (Jones et al., 2003). Prince and colleagues (2007) proposed three different mechanisms that might explain the link between mental disorders, such as depression, and chronic disease, such as epilepsy. First mental disorders may lead to other chronic diseases, such as cardiovascular disease and diabetes (Eaton et al, 1996; Rugulies, 2002). There is evidence that depression predicts the onset of epilepsy in some cases, though the exact association is currently unknown (Kanner, 2008). Second, chronic conditions may contribute to mental disorders through biological,

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psychological, or stress processes. Chronic conditions, especially neurological disorders such as epilepsy, may cause changes in the brain that may lead to depression. Additionally, chronic diseases can be disabling and can result in activity limitations and difficulties with work, finances, and relationships. The stress caused by the symptoms of a chronic disease and the subsequent difficulties may increase a person‘s distress and vulnerability to depression (Haddad, 2009; Vilhjalmsson, 1998). Having a chronic disease can also negatively impact personal resources, such as self-esteem and mastery, which may hinder an individual‘s ability to manage their condition and cope with depressive symptoms (Vilhjalmsson, 1998). Third, the presence of a mental disorder may affect treatment and outcomes of other health conditions. For example, depression contributes to poorer outcomes in chronic diseases, potentially due to biological effects, such as increased inflammation and platelet adhesiveness, or a decrease in self-management and positive lifestyle behaviors (Seelig and Katon, 2008). The interconnections between the potential causes of depression and chronic disease are illustrated by a conceptual model developed by Katon (2003). He suggests that risk factors for depression, including genetic vulnerability, childhood adversity, and stressful life events, might lead to negative behaviors that could foster the onset of chronic disease. For example, childhood adversity is related to risk behaviors such as smoking and overeating, which, in turn, are linked to chronic disease. People who smoke are more likely to develop lung disease, including cancer, whereas those who are obese are more likely to develop heart conditions, diabetes, and hypertension. Additionally, genetic factors may predispose a person to both depression and other health conditions (Katon, 2003).

Symptom Burden There is substantial empirical evidence that the symptom burden and functional impairment from depression adversely affects the health of people with chronic diseases. In a sample from 60 countries, individuals reporting depression had lower overall health scores compared to people with a chronic disease (angina, arthritis, asthma, or diabetes) but no depression. Comorbid depression with one of the four chronic diseases was associated with worse health than depression alone, a chronic disease alone, or a combination of chronic diseases but no depression (Moussavi, et al., 2007). Katon and colleagues (2007) found that patients with comorbid depression or anxiety and chronic disease reported significantly more medical symptoms compared to those with chronic disease alone, even when controlling for disease severity. Many people with chronic disorders, including epilepsy, must adhere to medical and lifestyle regimens in order to manage symptoms and prevent advancement of the disease. Because depression affects physical and mental functional ability (Baune et al., 2007), people with both chronic disorders and depression encounter more difficulties adhering to self-care regimens, which can result in a significant decrease in their health-related quality of life (Katon and Ciechanowski, 2002). Depression has been identified as a barrier to active selfmanagement because individuals feel isolated and unable to cope (Jerant et al., 2005). Additionally, Katon (2003) posits that underlying factors of depression, such as adverse events in childhood, may result in maladaptive attachment, which might prevent successful collaboration with physicians to manage a chronic condition.

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Epilepsy and Depression People with epilepsy must deal with the often unpredictable and potentially disabling effects of their seizures. Uncertainty and fear of having a seizure has been indicated as the worst thing about having seizures, followed by activity limitations and cognitive impairment (Fisher, et al., 2000a). Seizure characteristics, such as type (Grabowska-Grzyb et al., 2006; Kimiskidis, et al., 2007; Mendez, Doss, Taylor, and Salguero, 1993; Schmitz et al., 1999), severity (Cramer et al., 2003b; Mensah, et al., 2006), and frequency (Jacoby et al., 1996; Kimiskidis, et al., 2007; Mensah, et al., 2006; Paradiso et al., 2001; Thapar et al., 2005) are associated with higher levels of depression in both community and clinic based populations. People with epilepsy and depression also tend to take more seizure medications (Kimiskidis, et al., 2007; Mendez, et al., 1993) and have more side effects from these medications (Ettinger, Reed, and Cramer, 2004; Mensah, et al., 2006), though not all researchers have found this association (Grabowska-Grzyb, et al., 2006; Paradiso, et al., 2001). Medications taken to control seizures have unwanted side effects that can affect memory and cognition, reduce energy levels, and cause drowsiness (Fisher, et al., 2000b). Seizures can also impair memory and cognitive function, including concentration, forgetfulness, and disorientation. People with epilepsy who experience memory problems tend to be more depressed than those without memory problems (Corcoran and Thompson, 1993; McCagh et al., 2009). Due to the unpredictable nature of seizures, people with epilepsy are more limited in their ability to travel, work, and participate in social activities, leading to social isolation. In some countries, such as the United States, people with active seizures are legally restricted from driving until they are seizure free (Krauss et al., 2001). Although many people with epilepsy are employed, a significant proportion of individuals, across different countries, remain under- or unemployed and have experienced difficulties or prejudice when seeking jobs (Bishop, 2002; Chaplin et al., 1998; Collings and Chappell, 1994). In a literature review, Smeets and colleagues (2007) discuss the multiple factors that affect employment for people with epilepsy, such as level of supportiveness from employers, interference of seizures on job performance, and the impact of epilepsy on educational achievement and subsequently employment. Unemployment can lead to social isolation and feelings of worthlessness (Beran, 1999). Financial stress resulting from unemployment can compound feelings of isolation and lead to frustration and hopelessness. Several studies have shown that unemployment is a predictor of depression among people with epilepsy (Ettinger, et al., 2004; Grabowska-Grzyb, et al., 2006; Mensah, et al., 2006; Reisinger and DiIorio, 2009). Other related factors that contribute to depression among people with epilepsy are low income and financial stress (Ettinger, et al., 2004; Hermann and Whitman, 1989). Additionally, people with epilepsy and depression tend to have less social support (Hermann and Whitman, 1989; Reisinger and DiIorio, 2009) and more concerns about being in social situations (Ettinger, et al., 2004).

Stigma People with epilepsy experience stigma related to their condition, which can impact their psychological well-being and quality of life (Jacoby et al., 2005). Epilepsy is considered to be a stigmatizing disorder because of the unprovoked and unpredictable nature of seizures.

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Epilepsy can elicit feelings of fear, concern, and helplessness in others, especially if they do not know much about the condition or do not know what to do in the event of a seizure. Misperceptions about epilepsy, including the ideas that all people with epilepsy experience tonic-clonic seizures and that epilepsy is a mental disorder, still exist and can perpetuate stigma (Jacoby et al., 2004; Jacoby, et al., 2005). Jacoby and colleagues found that knowledge of and favorable attitudes toward epilepsy appear to be most common among individuals familiar with epilepsy, women, those with higher socioeconomic status, and those in a middle-age range (Jacoby, et al., 2004). In a study including respondents from 15 European countries, about half of the people with epilepsy report feeling stigmatized by their condition (Baker et al., 1999). Perceived stigma is associated with having active epilepsy, multiple seizure types, lower education level, greater perceived limitations due to epilepsy, and depression rates (Baker et al., 1997; Jacoby, et al., 2005). The stigma associated with epilepsy also has been shown to impact the self-efficacy needed to manage the condition (DiIorio, et al., 2006) and is linked with lower self-esteem and greater perceived helplessness (Jacoby, et al., 2005). People with epilepsy and depression must also face the added stigma of having a mental illness, which can impact self-esteem and self-efficacy as well (Corrigan et al., 2005).

Quality of Life The severity and number of depressive symptoms experienced by people with epilepsy are strongly related to their self-reported quality of life (Boylan, et al., 2004; Cramer et al., 2003a; Johnson et al., 2004; Loring et al., 2004; Tracy et al., 2006). Among a sample of people with refractory epilepsy, Boylan and colleagues (2004) found that depression, but not seizure frequency, duration, or type, predicted quality of life. Similarly, Loring et al. (2004) showed that depression and seizure worry were the strongest predictors of quality of life. Among clinic or community samples of people with epilepsy, predictors of quality of life include depression (Canuet, et al., 2009; Cramer, et al., 2003a; Johnson, et al., 2004; Szaflarski and Szaflarski, 2004; Tracy, et al., 2006), anxiety (Johnson, et al., 2004), seizure characteristics (control, frequency, or severity; Canuet, et al., 2009; Johnson, et al., 2004; Tracy, et al., 2006), stigma (McLaughlin et al., 2008), and the ability to drive (Tracy, et al., 2006). In each study that included depression, seizure characteristics were less important than depression in explaining quality of life (Canuet, et al., 2009; Cramer, et al., 2003a; Johnson, et al., 2004; Szaflarski and Szaflarski, 2004; Tracy, et al., 2006). Cramer and colleagues found significant differences in reported quality of life scores between individuals with no depression, mild depression, and major depression, with quality of life decreasing with increasing depression severity (Cramer, et al., 2003a). Notably, these findings demonstrate that even mild-to-moderate depression can have a significant influence on quality of life for people with epilepsy.

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Factors Influencing the Diagnosis of Depression Depression among people with epilepsy is often undiagnosed and untreated (Barry, 2003; Barry and Jones, 2005; Jones et al., 2005). In two separate studies, only 43% of patients with epilepsy and current major depression were being treated with antidepressants (Jones et al., 2005; Wiegartz et al., 1999). Individual-, provider-, and system-level factors contribute to this lack of recognition and treatment.

Individual-Level Factors According to the depression literature, the individual-level factors that influence people‘s decision to seek help for depression include symptom severity, fear of stigma, willingness to disclose problems, perception of the benefits of treatment, access to care and financial costs (Collins et al. , 2004). People may elect not to seek treatment for depression because they feel they can handle it themselves, it is an expected response to life stress, or that it is due to other chronic conditions (Blumenthal and Endicott, 1996; Goldman et al., 1999). An individual may first try to employ coping strategies before seeking treatment for depressive symptoms. These coping mechanisms may include spirituality, calling on support of family or friends, or more negative responses such as denial. An individual also may recognize the need for treatment, but be unable to access treatment because of lack of availability of mental health professionals who share a similar race or gender, inconvenient location of care, lack of time, or inadequate insurance. Additionally, the symptoms of depression, such as fatigue and lack of motivation, may preclude treatment-seeking efforts (Cooper-Patrick, et al., 1997). The likelihood of seeking treatment for depression is higher among females, people who are highly educated, and those older in age. Factors related to depression that are also positively associated with help seeking include prior treatment for depression, the length and severity of the depressive episode, and greater impairment associated with depression (Blumenthal and Endicott, 1996; Galbaud du Fort et al., 1999). Once an individual consults a provider about their symptoms or is identified as having depression, he or she must then be willing to accept the diagnosis and adhere to the prescribed treatment regimen (Goldman, et al., 1999). Concerns about treatments, such as side effects of medications or time needed to attend therapy sessions, may hinder adherence (Cooper-Patrick, et al., 1997). People with epilepsy may face additional barriers to being diagnosed and treated for depression. People with active seizures cannot obtain a driver‘s license and, therefore, are reliant on public transportation, family, or friends to make doctor appointments. Moreover, people with epilepsy and depression tend to have less support from others (Hermann and Whitman, 1989; Reisinger and DiIorio, 2009), and thus may have more difficulty getting to appointments. The additional burden of doctor visits can also present a prohibitive cost element, especially since depression among people with epilepsy is associated with being unemployed, having low income, and experiencing financial stress (Ettinger, et al., 2004; Hermann and Whitman, 1989). Some people with epilepsy do not want to add medications to their current regimen or feel that their depressive symptoms may be temporary and do not need treatment (Barry, et al., 2008).

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Provider-Level Factors The most important component in the recognition of depression is the patient‘s physician. General practitioners can be a gateway into mental health services, though they often do not detect depression in their patients. Providers may lack knowledge about mental health problems, the skills to identify symptoms, or the time for screening and referral (Collins, et al., 2004; Wiegartz, et al., 1999). Additionally, detection and diagnosis depends on the degree to which the patient‘s symptoms are outwardly presented (Collins, et al., 2004). People with chronic diseases often present with somatic symptoms resulting from their depression that may be difficult to disentangle from their chronic condition (Goldman, et al., 1999). Borowsky and colleagues (2000) found that physicians are less likely to detect depression among African Americans, men, and younger patients, but were more likely to recognize depression in patients with diabetes or hypertension. The authors suggest that care of chronic conditions, which often require frequent trips to the provider, provide an opportunity for physicians to know their patients better and thus recognize mental distress (Borowsky, et al., 2000). Treatment of depression can be hindered by lack of knowledge and skills related to evidence-based treatments among both general physicians and mental health practitioners (Collins, et al., 2004). The patient-provider relationship and an individual‘s satisfaction with their care are important elements related to the quality of mental health care received (Meredith et al., 2001) and continuation of treatment. A person‘s perception of their provider‘s medical and interpersonal skills can affect their willingness to share information about sensitive topics related to depression (Cooper-Patrick, et al., 1997). Several factors influence provider‘s recognition and diagnosis of depression among people with epilepsy. Shneker and colleagues (2009) found that 62% of providers in the United States who treat epilepsy do not screen for depression, and 42% are not comfortable initiating treatment for depression. Discussions of depression and other mood-related topics occur infrequently between patients and neurologists (Gilliam, et al., 2009). Providers treating epilepsy may not have time during the visits with their patients to discuss mental health topics in addition to seizure and medication management or they may feel that their responsibility is to focus on the epilepsy rather than other conditions. Additionally, providers may not screen for or diagnose depression among people with epilepsy because of the misconception that depression comorbidity with a medical disorder does not need to be treated (Barry, 2003). Sometimes depression in people with epilepsy may not be easily classified according to the diagnostic criteria, which could impede recognition of the disorder by both providers and patients (Krishnamoorthy, 2003). Finally, providers may also be wary of prescribing an antidepressant because of potential interactions with antiepileptic drugs, despite recommendations to treat with antidepressants and guidelines for choosing an appropriate medication (Barry et al., 2008).

System-Level Factors System-level factors are also important when considering provision of depression treatment. In the United States, the United Kingdom, and other countries, depression is increasingly being treated in a primary care setting (Haddad, 2009; Kessler, et al., 2005;

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Olfson, et al., 2002). The shift in service delivery has been accompanied by increases in the rate of outpatient treatment for depression and use of antidepressants (Olfson, et al., 2002). Despite the increased use of depression treatment, the quality of treatment is not assured (Goldman, et al., 1999) and an unmet need for mental health services persists (Mojtabai, 2009). Several system-level challenges may prevent individuals from receiving needed services. Mental health care is often described as being fragmented, or existing in a system apart from the general health system. This fragmentation is partially due to the historical treatment of mental illnesses in institutional settings (Salize et al., 2007). Separation between the medical and mental health care systems based on geographic location of services, different funding mechanisms, lack of communication and information sharing between providers, and cultural differences hamper quality of care (Druss, 2007). While deinstitutionalization has occurred over the past thirty to fifty years across the globe, and people with mental illnesses are more likely to receive treatment in community settings, variation does exist between countries. In Russia, for example, many people are still treated in hospitals, in large part due to outdated financing systems from the Soviet era (McDaid, et al., 2006). In developing or newly industrial countries, mental health resources, including facilities, trained professionals, and methods for data collection and tracking, are extremely scarce (Larrobla and Botega, 2001; Shinfuku, 1998). Countries are working to overcome these systemic barriers to mental health treatment. For example, in the United States, the passage of the mental health parity law in October 2008 removed a major barrier by requiring insurance companies to provide equal coverage for mental and physical conditions. However, there are limitations to the law. For instance, small companies are not required to comply, and insurance companies can decide which mental disorders to cover (Bernstein, 2008). In other countries, ongoing efforts are being made, such as improving access to community-based treatments in Russia and Japan (McDaid, et al., 2006; Shinfuku, 1998) and passage of Mental Health Laws in Taiwan, Korea, and other Asian countries to protect the human-rights and community-based treatment options for people with mental illnesses (Shinfuku, 1998).

Addressing Barriers to Diagnosis The need for greater recognition and treatment of depression among people with epilepsy has been firmly established in recent conferences and in the literature (Barry, 2003; Barry, et al., 2008; Barry and Jones, 2005; Jones et al., 2005). The Centers for Disease Control and Prevention acknowledged the barriers people with epilepsy face in receiving adequate mental health care during their Living With Epilepsy II Conference in 2003 (American Epilepsy Society, Centers for Disease Control and Prevention, Chronic Disease Directors, Epilepsy Foundation, and National Association of Epilepsy Centers, 2003; Austin, Carr, and Hermann, 2006). One of the recommendations for improving quality of life was to ―Increase the availability of mental health assessments and treatment at comprehensive epilepsy centers and within the public health system‖ (American Epilepsy Society, et al., 2003, p. 24). Additionally, many reviews have been written about treating depression in people with epilepsy (for example: Barry, 2003; Barry and Jones, 2005; Gilliam and Kanner, 2002;

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Harden, 2002; Krishnamoorthy, 2003). While the authors discuss prevalence figures, possible etiologies, and treatment recommendations, they do not address barriers or facilitators to recognition and treatment, methods for overcoming barriers, or models for integrated care. Similarly, few investigators have examined ways to address this problem, especially at a system- and policy-level.

Individual-Level Factors People do not seek treatment for depression for a variety of reasons, including not recognizing the symptoms of depression, belief in their own ability to manage the symptoms, or fear of stigma related to the diagnosis of depression. Education of people with epilepsy will help overcome these barriers. Patient education materials on depression are available for distribution by health care organizations. One way to educate patients is to purchase and place these materials in waiting rooms and clinics. Epilepsy websites can provide information about depression and links to depression websites in order to foster learning about the condition. In addition to pharmacologic and counseling approaches to treatment, people can manage symptoms through development of stress management skills. Active involvement in care leads to more effective management of depression, so self-management training and support should be provided to those diagnosed with depression. Other approaches include exercising, positive coping strategies, avoidance of risk behaviors such as drug and alcohol use, and support from family and friends. As programs to treat depression that can be delivered in the home are developed, it will be necessary to make people with epilepsy aware of these alternative treatment methods.

Provider-Level Factors Experts in the field of epilepsy research recommend screening all people with epilepsy for depression, followed by further evaluation and treatment for those who exhibit symptoms of depression (Barry, et al., 2008). Universal screening can potentially address several barriers that prevent the recognition and diagnosis of depression in people with epilepsy. Often, people with depression may not recognize or acknowledge the depressive symptoms they experience or they may be unaware of treatment options. Depression screening gives providers with an opportunity to broach the potentially sensitive topic of depression with their patients. Providers also may be alerted to the presence of depression in patients who do not outwardly seem depressed or may be complaining of mainly somatic symptoms. Several depression screening tools have been validated among people with epilepsy, including common scales such as the Beck Depression Inventory (BDI), the Center for Epidemiological Study of Depression (CES-D) and the Patient Health Questionnaire (PHQ9), and an epilepsy-specific measure, the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E; Friedman, et al., 2009; F. G. Gilliam, et al., 2006; Jones, Hermann, Woodard, et al., 2005; Seminario, Farias, Jorgensen, Bourgeois, and Seyal, 2009). Gilliam and colleagues (2006) developed the NDDI-E to account for the fact that some symptoms of depression, such as fatigue, problems with memory and concentration, appetite change, and sleep disturbances, overlap with possible side-effects of anti-epileptic medication or

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symptoms associated with having epilepsy. This short instrument, therefore, assesses the frequency of depressive symptoms that are not similar to those that might result from epilepsy or anti-epileptic medication. The scale includes six items, which are rated on a four-point Likert scale from ―never‖ to ―always or often.‖ Respondents indicate how often over the past two weeks, including the day of assessment, they experienced each of the items: everything is a struggle, nothing I do is right, feel guilty, I would be better off dead, frustrated, difficulty finding pleasure (F. G. Gilliam, et al., 2006). Despite the existence of brief validated measures, the majority of practitioners who treat people with epilepsy do not screen for depression (Shneker, et al., 2009) and only a couple investigators have studied screening procedures. Seminario and colleagues (2009) used the PHQ-9 to determine depression prevalence among people who visited an epilepsy clinic. Almost 30% of the patients screened scored high enough on the PHQ-9 to indicate likely major depression; half of these patients had not received treatment for their depression (Seminario, et al., 2009). In an urban clinic, Friedman and colleagues (2009) implemented a systematic screening procedure with the NDDI-E, followed by a structured interview for individuals who screened positive for depression. Depression was identified in about 25% of the screened sample, compared to 2.6% in a group of patients that was not systematically screened. This finding suggests that screening can be an effective method of identifying people with epilepsy who also suffer from depression (Seminario, et al., 2009). What is not clear from these studies, however, is the process by which the patients with depression are linked up with treatment. More research is needed on how to facilitate this process and identify resources available or needed at clinics. Other approaches for increasing the recognition, diagnosis, and treatment of depression include continued provider education on evidence-based screening and treatment options, strategies to improve patient-provider relationships, and encouraging collaboration between neurologists, epileptologists, and mental health providers. Because many providers who treat epilepsy do not discuss depression with their patients, due to either time constraints or discomfort with the topic (F. Gilliam, et al., 2009; Shneker, et al., 2009), it is important to explore ways, in addition to screening, to improve patient-provider communication about depression. Such methods could include incorporating patient-oriented communication strategies such as motivational interviewing.

System-Level Factors Dealing with depression as a chronic illness requires long-term care and monitoring. The major system-level barrier to effective depression treatment is the fragmentation medical and mental health systems. Collaborative models of care seek to bridge this gap and have demonstrated effectiveness in providing high quality of care for people with depression. In order to be successful, collaborative models require a restructuring of traditional health care delivery systems and participation from actors at all levels of the system. Patients are encouraged to become informed and activated in order to take part in self-management activities. Providers work in multidisciplinary teams to coordinate acute care and chronic disease management. Computerized information systems provide reminders, provider feedback, and patient registries (Bodenheimer, Wagner, and Grumbach, 2002). Additionally, financial systems are put in place to address the separation between funding streams for

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medical and mental health and appropriately reimburse providers for services (Kilbourne, et al., 2004; Mauer and Druss, 2009). The multi-level nature of these models and the need to tailor any approach to the realities of individual health care systems presents substantive challenges to their implementation. However, collaborative care models have been successfully employed in numerous settings (Bodenheimer, et al., 2002). One reason for the success is the stepped approach to care in which intensity of care increases based on symptoms (W. J. Katon and Seelig, 2008). Primary care physicians are involved at step 1 and provide screening, diagnosis, treatment, and education. Patients who are newly diagnosed or relapsed move to step 2 care that involves allied health professionals who closely monitor the patient and provide follow-up support. Patients who do not response to initial treatment are referred to a psychiatrist or mental health professional for more accurate diagnosis and more intensive care (step 3). Some of these latter patients with more severe symptoms may progress to step 4 in which the psychiatrist assumes primary responsibility for ongoing management. These patients may need a combination of treatments and close monitoring for longer periods of time. Continued reevaluation of patients is an important component of the stepped care approach; patients can move up or down the steps so that their care matches their changing needs. Collaborative care has been successfully incoporated into primary care settings to treat depression. In a systematic review of educational and organization interventions for depression management, Gilbody and colleagues (2003) found that successful interventions targeted multiple levels with diverse strategies, such as clinician education, nurse case management, and interaction between primary and secondary care. Interventions with simplistic approaches, such as only providing treatment guidelines or clinician education, proved to be ineffective in reducing depressive symptoms among patients. In particular, case management has emerged as an effective component in depression care (Christensen, et al., 2008; Gilbody, et al., 2003). The role of the case manager can include patient assessment, patient and provider education, and monitoring over time (Bruce, et al., 2004; Dietrich, Oxman, Burns, Winchell, and Chin, 2003; Unutzer, et al., 2002). Patients who interact with case managers report significantly greater reductions in depressive symptoms compared to usual care patients (Bruce, et al., 2004; Christensen, et al., 2008; Gilbody, et al., 2003; Unutzer, et al., 2002). Barry (2003) notes that epilepsy clinics may be able to implement treatment paradigms such as psychiatric liaison strategies, nurse educators, and collaborative care models. He notes, ―Collaborative care that includes a fusion of psychiatry and neurology is clearly needed, and people with epilepsy and depressive disorders will benefit greatly from improved treatment‖ (Barry and Jones, 2005, p. 526). Currently, no studies have been reported in the literature on the application of chronic disease management models to treat people with epilepsy, with or without depression. These models theoretically could be used to improve quality of care for both epilepsy and depression.

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Treating Depression in Epilepsy Depression Treatments Current recommendations for treating depression in people with epilepsy include antidepressant medications (Gilliam, 2005; Krishnamoorthy, 2003) and cognitive behavioral therapy (CBT). After starting patients with epilepsy on depression treatment, providers must follow-up regularly to assess for side-effects and suicidal ideation (Barry and Jones, 2005).

Pharmaceuticals The first classes of antidepressants, monoamine oxidase inhibitors (MAOIs) and tricyclic antidepressants (TCAs), were introduced in the 1950s. The efficacy of these medications in reducing depressive symptoms has been documented by numerous studies; however they caused unpleasant side effects and had the potential to adversely interact with other drugs. A newer class of antidepressants, selective serotonin re-uptake inhibitors (SSRIs), has also been shown to be effective, with fewer side effects (Cipriani et al., 2007; Judd, 1998). When prescribing antidepressants for people with chronic conditions, providers must take into account possible interactions with other prescription medications and how the sideeffects may affect the chronic condition (Pilling et al., 2009). When treating depression in epilepsy, it is recommended to start a patient on a low dose SSRI and gradually increase the dose to reduce the risk of increasing seizures (Barry, et al., 2008). Continuous medication management and assessment of adherence is important because many people stop taking antidepressants before completing a full therapeutic course (Cassano and Fava, 2002).

Therapy Cognitive behavioral therapy (CBT) developed out of Aaron Beck‘s Cognitive Therapy, which he designed based on his research with depression. Beck recognized that thought patterns affect mood and that how people perceive their experiences can influence their feelings and behaviors (Corey, 2005). CBT is a combination of strategies that can be used to alter automatic thought processes and behaviors. A major component of depression is the negative thought processes. People who are depressed often think discouraging and fatalistic thoughts such as ―I am at fault,‖ ―I can‘t do anything right,‖ or ―I will not be able to succeed no matter what I do.‖ CBT is insight-focused and involves changing how people think about themselves and their reaction to events and situations. They learn how to identify negative thoughts and modify those thoughts into positive or at least neutral thinking and not to accept the negative result as inevitable. To help with the process of learning how to think differently, a person in therapy is generally given behavioral strategies to help. One strategy involves using a diary to record events and thoughts about the events. Information from the diary is then used to help people evaluate situations, recognize patterns in their thinking, and learn to be less critical and more rational about their performance. Using the diary and other strategies are often assigned as homework between sessions to encourage routinization of the thought

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identification and modification skills. The skills learned during limited sessions (up to 20) can be used in the future to deal with stressful situations after the treatment ends. Extensive research has been conducted to determine the effectiveness of CBT in reducing depressive symptoms and preventing relapse. Vittengl and colleagues (2007) performed a systematic review and meta-analysis of the effects of CBT on relapse and recurrence of depression. They found that CBT was more effective at preventing relapse and recurrence compared to a course of anti-depressants alone. Continuation of CBT after remission significantly prevented relapse/recurrence of depression compared to medication or treatment discontinuation (Vittengl, et al., 2007). Although the exact mechanisms through which CBT works are not entirely understood, it is thought that changes in underlying beliefs about the self and explanations for negative events, along with acquisition of cognitive coping skills, contribute to the lasting effects of CBT (Barber and DeRubeis, 2001; Hollon et al., 2006). Research among people with epilepsy and depression has shown that cognitive behavioral methods have been effective for reducing depressive symptoms (Davis et al., 1984), reducing the impact of epilepsy-related problems (Goldstein et al., 2003), and increasing overall quality of life and seizure management (Au, et al., 2003). Based on a systematic review, however, Ramaratnam and colleagues (2008), recommend additional research to fully support the claim that cognitive behavioral and other psychological methods for treating depression reduce seizure frequency and lead to improved quality of life. Interpersonal Therapy (IPT) seeks to help the person gain competence with interpersonal skills. Depression is often accompanied by a loss of interest and subsequent withdrawal from social functions, further compounding feelings of worthlessness. Interpersonal therapy is particularly helpful when depression relates to loss or change, creating a situation in which relationships have changed or are strained, for example after the death of a loved one, moving to a new city, changing a job or medical illness. IPT focuses on current problems and helps people find better ways to deal with situations. For example, a person recently diagnosed with epilepsy may face changes in his/her role. The focus would be on what the person is giving up in the old role and taking on in the new role, what emotions surround the change, expressing emotions about the change, and developing skills for the new role. The person may also experience grief; IPT would deal with acceptance of difficult emotions and replacement of lost relationships. IPT is also effective in reducing depression; its efficacy appears to be similar to that of antidepressants and CBT (de Mello et al., 2005; Hollon, et al., 2006). Additionally, IPT enhances the quality of relationships (Hollon, et al., 2006). The proposed mechanism of IPT is that changes and improvements in relationships reduce interpersonal difficulties that may trigger or worsen negative mood (Kelly et al., 2007). Currently, research is lacking on the effect of IPT on treating depression in people with epilepsy; however IPT methods appear to be appropriate for addressing the needs of people with epilepsy and depression.

Mindfulness Mindfulness practices developed as part of the Buddhist tradition over 2500 years ago. Only more recently has mindfulness received attention within Western psychology and been incorporated into treatments for depression. Despite the different origins of mindfulness and psychotherapy, both practices strive to alleviate psychological suffering and propose a plan

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for doing so (Germer, 2005; Rubin, 1999). Mindfulness is fully compatible with various theories of psychotherapy and has the potential to provide benefits to both the therapist and the patient. Mindfulness has been defined variously as ―…paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally‖ (Kabat-Zinn, 1994, p. 4) and ―awareness of present experience with acceptance‖ (Germer, 2005, p. 7). It is a process of observing what is going on moment-to-moment, which moves the practitioner away from automatic patterns of thinking, especially those concerned with the past or future. Mindfulness teaches people to develop a different relationship with their thoughts, one that is more ‗detached‘ and less reactive (Segal et al., 2002). Mindfulness can take on a variety of forms including formal sitting meditation and exercises designed to foster mindful awareness of breath, body, sensations, thoughts, or actions (Kabat-Zinn, 1990; Mace, 2007; Segal, et al., 2002). As suggested by Martin (1997), ―…mindfulness would appear to help facilitate an optimal circumstance for psychological change‖ (Martin, 1997, p. 292). Segal et al. (2002) fused mindfulness and CBT in their Mindfulness-Based Cognitive Therapy (MBCT), an eight week depression treatment program for small groups. According to MBCT, vulnerability to relapse and recurrence of depression is linked to repeated associations between depressed mood and negative patterns of thinking, which lead to altered thinking patterns and physiological responses. Teaching people how to identify negative thoughts and feelings and then respond mindfully by disengaging from those thoughts, and thus prevent ruminative cycles of thinking, should aid in preventing the spiral into serious depression (Segal, et al., 2002). Studies on MBCT have shown that it is effective in preventing relapse among people who have experienced three or more episodes of depression (Ma and Teasdale, 2004; Teasdale, et al., 2000). Participants in MBCT programs have noted that the program fostered greater awareness and acceptance of events, relaxation, and better coping. They also appreciate the group support aspect of the program and often report practicing mindfulness skills after the program ends (Mason and Hargreaves, 2001;Smith et al., 2007). The incorporation of mindfulness-based techniques for treatment of depression among people with epilepsy is described below in the Project UPLIFT study.

Motivational Interviewing Motivational Interviewing (MI) is a communication style developed by Miller and Rollnick (2002) to encourage individuals to take responsibility for their behavior and for their decisions and actions to modify behaviors. The aim of MI is for the facilitator to work with the individual, creating a collaborative bond, and encourage him or her to find internal motivation for change. MI was originally developed to address problem drinking behaviors (L. Miller and Rollnick, 2002; W. Miller, 1995), but has since been applied to a variety of conditions and behaviors including mental disorders (Lundahl and Burke, 2009), smoking cessation (Colby, et al., 1998), fruit and vegetable intake (Resnicow, et al., 2001), and adherence (DiIorio, et al., 2003; Smith et al., 1997). Rubak and colleagues (2005) conducted a systematic review and meta-analysis of interventions using MI and found that MI significantly improved behavior change and health outcomes. The goal of the MI counselor is to create a nonjudgmental and supportive environment that will allow the person to take an active part in the session and openly discuss positive and

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negative thoughts and feelings related to behavior change. An MI counseling session often begins with an assessment of the person‘s behavior and his or her motivation, confidence, and readiness to change or maintain a desired behavior. One objective is to uncover barriers to behavioral performance through the use of open-ended questions, reflective listening (i.e., paraphrasing key statements and presenting interpretive comments), reinforcement of change talk (statements that indicate willingness to change behavior), and provision of affirmations (supportive comments). The MI counselor also uses techniques to address discrepancies and ambivalence to change. Toward the end of the session, the person creates an action plan that includes specific performance goals (L. Miller and Rollnick, 2002). Combining MI with psychotherapy provides an opportunity for enhanced patient engagement in their treatment (Lundahl and Burke, 2009). Although MI techniques have not yet been used to address depression among people with epilepsy, a program aimed at improving self-management behaviors that incorporated MI was shown to improve self-management and self-efficacy (DiIorio et al., 2009).

Innovative Approaches to Treating Depression among People with Epilepsy Innovative approaches for treating depression among people with epilepsy could potentially reduce the burden of depression in this population. As noted above, brief screening measures can aid physicians and neurologists in screening for depression among people with epilepsy (Friedman, et al., 2009; Seminario, et al., 2009). Screening and identification of people with depression can hopefully facilitate treatment through antidepressants and therapy. An alternative, and complementary, procedure for treating people with depression could include interventions based on cognitive behavioral or other psychotherapeutic methods delivered to the person with epilepsy at their home, rather than at a physician‘s or therapist‘s office. These interventions could be offered over the internet or telephone, or involve home visits. The benefits of providing treatment for depression through distance delivery include improved access, especially among a population that may experience mobility difficulties, and potential cost-effectiveness because the programs can be delivered by non-professionals and sometimes in a group setting. Interventions also have the potential to address determinants of depression, for example, lack of social support, which are more difficult to alter though physician visits. This section provides a short review of innovative interventions for treating depression among people with epilepsy, many of which employ strategies and treatments discussed above.

In Person -- Clinic and Home Currently, Ciechenowski and colleagues are adapting an intervention originally developed for socially isolated older adults for people with epilepsy (Ciechanowski, et al., 2004; Managing Epilepsy Well, 2010b). The initial program, titled Program to Encourage Active, Rewarding Lives for Seniors (PEARLS), involved trained therapists visiting participants in their home to deliver eight 50-minute sessions over the course of 19 weeks.

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The sessions are based on problem-solving treatment, which focuses on skill building, identifying daily problems that affect mood, and addressing these problems in order to ultimately reduce depressive symptoms. The sessions emphasize social and physical activities and encourage participants to select pleasant activities to engage in between sessions. A random controlled trial of the PEARLS program was conducted among older adults with minor depression or dysthymia. Participants in the programs had a significant decrease in depressive symptoms, greater remission, and improvement in functional and emotional wellbeing when compared to the usual-care control group (Ciechanowski, et al., 2004). The modified intervention will target people with epilepsy and major depression, minor depression, and dysthymia (Managing Epilepsy Well, 2010b).

Distance Delivery - Telephone and Internet Although few interventions for people with epilepsy have utilized distance delivery methods, the literature contains several examples of CBT-based programs for general populations. The effects of internet and phone-based interventions include improvement in depression scores, lower severity of symptoms, greater remission rates, and improved functioning (Andersson, 2006; W. Katon and Ciechanowski, 2002; D. Kessler, et al., 2009). These programs usually include multiple weekly sessions, often led by a therapist or trained facilitator. Clarke and colleagues (2005; 2002) developed ODIN (Overcoming Depression on the InterNet), a self-help program that included CBT-based cognitive restructuring principles. A trial of ODIN that included both the internet program and telephone reminders resulted in improvement in depression scores for both moderately and severely depressed participants (Clarke, et al., 2005). Participants in other internet-based programs, including Beating the Blues (Proudfoot, et al., 2004) and MoodGYM (Christensen, Griffiths, and Jorm, 2004), reported significantly lowered depression scores compared to either a control group or a group who accessed an informational web-site on depression, respectively. Telephone-based programs demonstrate similar efficacy. Mohr and colleagues (Mohr, et al., 2005; 2000) tested a 16-week telephone CBT program for people with multiple sclerosis and reported improvements in positive affect and some depression measures. Finally, telephone care management for depression accompanied by telephone psychotherapy resulted in significant reductions in depressive symptoms, while only marginally increasing health services costs compared to regular care (Simon et al., 2009). In addition to effectively treating depression, participants rate internet- and telephonebased programs highly in regards to satisfaction. In one study, participants‘ reported satisfaction and preference was comparable whether they participated in the computer program or interacted with a therapist face-to-face (Gega et al., 2004). The participants in Beating the Blues also reported being satisfied with CBT over the computer (Proudfoot, et al., 2004). Wright et al. (2005) showed that patients expressed high levels of satisfaction with their computer-assisted therapy program, which was user-friendly, interactive, and designed to be used by people with low computer literacy. One intervention aimed at reducing depressive symptoms among people with epilepsy through distance delivery methods has been tested. Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) is a CBT and mindfulness-based program that is designed to be delivered in groups over the phone or internet (Thompson, et al., Under

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review). The Project UPLIFT intervention includes 8 weekly sessions that focus on developing cognitive behavioral and mindfulness skills. The intervention was efficacious in reducing depressive symptoms and increasing knowledge and skills related to CBT and mindfulness compared to the control group (Thompson, et al., Under review). Participants in the pilot study of Project UPLIFT also expressed satisfaction with the program, perceived the intervention to be beneficial, and enjoyed interacting with group members (Reisinger Walker, Obolensky, Dini, and Thompson, Under review). The results of other studies indicate that distance delivery is a feasible and acceptable method for disseminating interventions to people with epilepsy. Escoffery and colleagues (2007) conducted a survey over the internet and at two epilepsy clinics. They found that 99% of the internet respondents and 57% of clinic participants used the internet to find health information. A majority of the respondents reported being likely to use an internet-based selfmanagement program (Escoffery, et al., 2007). One such program is WebEASE (Epilepsy Awareness, Support, and Education), an online theory-based self-management program aimed at improving medication adherence, enhancing sleep quality, and reducing stress. Participants in the pilot study showed some improvements in epilepsy self-management, sleep quality, epilepsy self-efficacy and social support (DiIorio et al., 2009). A larger randomized control trial is currently underway to test the efficacy of the program (Managing Epilepsy Well, 2010a). DiIorio and colleagues (2009) have also pilot tested a telephone self-management program; participants were satisfied with the program and showed modest improvements in self-efficacy, outcome expectancies related to medication and managing seizures, and knowledge of the social aspects of epilepsy. Either program could be easily adapted to address depressive symptoms.

Summary Depression is a major public health problem and presents a great burden for people with chronic diseases, including individuals with epilepsy. The biological consequences and stressors from having a chronic disease can increase an individual‘s risk for having a depressive episode. Additional psychosocial variables can reduce coping abilities and increase the likelihood for a person to develop depression. For example, predictors of depression among people with epilepsy include unemployment, financial strain, stigma, and low social support. Depression negatively affects quality of life, functioning, and relationships, thus causing further stress. People with epilepsy face a variety of person, provider, and systematic barriers for being diagnosed with and treated for depression. At the patient level, an individual‘s decision to seek treatment may be hampered by acceptance of their symptoms, fear of stigma, willingness to discuss their condition with a provider, and accessibility of treatment. Barriers at the provider level include a lack of time or, possibly, inclination to discuss depression with patients. Providers also may not have the knowledge or skills to diagnose and adequately treat depression. At a systems level, the lack of integration of mental health and general medical services can preclude the availability of affordable and quality care for depression. Developing countries face additional challenges in being able to provide community-based treatment.

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Despite the negative impact of depression and the barriers to recognition and treatment, depression can be successfully treated once identified. The stigma of depression is on a downward trend as people become more educated about the condition and treatment options. Primary care doctors or specialists can serve as a gateway to mental health services by providing medication and referring for therapy. Using brief screening measures, such as the PHQ-9 and NDDI-E, are one way to improve the recognition of depression among people with epilepsy. Additionally, researchers are currently developing and testing innovative interventions to combat depression and promote self-management behaviors. Such interventions can be delivered to the individuals‘ homes through in-person visits or distance technology. Also, these programs do not necessarily need to be administered by providers or mental health professionals. For example, Project UPLIFT employs people with epilepsy to facilitate the intervention groups. A psychologist oversees the project, but reaches many more people than she would if delivering therapy face-to-face. This type of set up may ultimately help to relieve burden on the providers and represent a cost-savings. Finally, at a systemslevel, progress is being made to improve access to treatment, financing systems, and data collecting procedures. Continuing efforts need to be made to address the risk factors for depression and the barriers to diagnosis and treatment among people with epilepsy, at all levels. Future research should continue explore the factors that predict depression and how to best address them in order to prevent depression. Additionally, it will be important to investigate how to integrate depression screening protocols and collaborative care models into primary care and neurology practices to facilitate the detection of depression and initiation of treatment. As the results of intervention trials, such as PEARLS and Project UPLIFT, are published, the next step will be to determine how to most effectively use the programs in real-world settings. Finally, policy reform to remove systematic barriers to receiving treatment will ultimately benefit all people with depression.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter XVI

Epilepsy in the Elderly: Diagnostic Approach and Treatment Sophie Dupont 1, B. De Toffol, 2Marc Verny 3, and Caroline Hommet 4

1. Unité d‘Epileptologie, Clinique Neurologique Paul Castaigne, Hôpital de la Salpêtrière, Paris, France 2. Service de Neurologie, CHU Tours et université F Rabelais, Tours 3. Centre de Gériatrie, Groupe hospitalier Pitié-Salpétrière, assistance publique-hôpitaux de Paris and Université Pierre et Marie Curie, Paris, France 4. Médecine Interne Gériatrique et CMRR, CHU Tours et université F Rabelais, Tours

Abstract Epilepsy is defined as a chronic illness, diagnosed after the occurrence of two or more unprovoked seizures (seizures which occur without any obvious immediate cause) and must be differentiated from acute symptomatic seizures (which are provoked by acute illnesses) in order to avoid confusing data on dementia. Recognizing and correctly diagnosing late-onset seizures in the elderly may be challenging for various reasons: limited knowledge of seizure symptoms in this age group, multiple conditions that may mimic seizures such as transient ischemic attacks, stroke, syncope, sleep disorders and toxic or metabolic disturbances. When seizures are suspected, there is often limited access to specific diagnostic tools such as video-EEG, or an absence of witnesses so that diagnosis is not easily confirmed. Epilepsy is particularly complex in older people since they  Correspondence: Associate Professor Sophie Dupont, Unité d‘Epileptologie, Clinique Neurologique Paul Castaigne, Hôpital de la Salpêtrière, 47, boulevard de l‘Hôpital, 75651 Paris cedex 13, France. E-mail: [email protected].

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are more likely to have co-morbidities than younger individuals. Antiepileptic drugs (AEDs) should be started only after the diagnosis is clearly established, when the risk of recurrence is high and using mono-therapy whenever possible. Treatment must be adapted to the particular susceptibility of elderly subjects. Although little data are available, the newer AEDs offer significant advantages over older medications in this context.

Keywords: elderly, epilepsy, dementia, antiepileptic drugs

Epilepsy in the Elderly: Frequent but Under-diagnosed Both unprovoked and acute symptomatic seizures are common in the elderly.The incidence of any type of first seizure increases with age: from 50 per 100, 000 in persons aged 40-59 years to 127 per 100, 000 in those older than 60 years.(Hauser et al., 1993) The prevalence steadily increases with age and is estimated to be 5/1000 between 20 to 50 years, 7/1000 between 55 to 64 years and 12/1000 between 85 to 94 years.(Hauser et al., 1996) The four most common aetiologies for seizures in the elderly are cerebrovascular disease, toxic and metabolic disorders, dementia and brain tumour (Granger et al., 2002; Hauser et al., 1996). Cerebrovascular disease is a predisposing factor for seizures in the elderly and is related to the anatomical lesions of the disease and to co-morbidities particularly vascular pathologies and poly-medication. The annual incidence of epilepsy, defined as the occurrence of at least two unprovoked seizures separated by an interval of more than one day, increases from 110 per 100,000 in people between the ages of 65 and 69 to more than 160 per 100,000 in those over 80 (de la Court et al., 1996; Faught, 1999; Hauser, 1992; Luhdorf et al., 1986a). Certain particularities should be considered in aging. For instance, aging itself is a common factor for both epilepsy and dementia. Cerebrovascular disease is the major aetiology of epilepsy in the elderly, accounting for up to 50% of cases in subjects aged ≥ 65 year. Dementia, particularly Alzheimer‘s Disease (AD), accounts for 9 to 17% of the epilepsies seen in the elderly (Granger et al., 2002 ; Hauser, 1992; Hauser et al., 1993; Hauser et al., 1996; Hesdorffer et al., 1996; Jallon et al., 2001; Stephen and Brodie, 2000). Although AD is the most common form of dementia, other causes include, in descending order, vascular disease, Lewy Body disease and frontal lobe dementia (Lobo et al., 2000) but data are very sparse concerning incidence or prevalence of seizures in these other dementia. Most studies on dementia have retrospectively evaluated the prevalence of epileptic seizures in patients with autopsy-proven AD (Hauser et al., 1986; Mendez et al., 1994; Romanelli et al., 1990). A diagnosis of AD is associated with an increased risk of unprovoked seizures ranging from 9 to 26% compared to non-demented, similar-aged subjects (Hauser 1986). Mendez , 2003) reported that 10-22% of AD patients have at least one unprovoked seizure. In a study in a psychiatric population aged > 55 years with dementia (most suffering from AD but some with vascular dementia), McAreavey et al (1992) reported that 9% of the patients had experienced seizures. Although theses studies are interesting, they all contained various methodological caveats such as particularly small sample sizes in the neuro-pathological

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studies, no systematic evaluation of clinical variables, the absence of imaging studies or a selection bias. In an observational study describing first seizures in a sample of elderly subjects with AD hospitalized in an acute geriatric care unit, Hommet et al (2007) reported that 2,5 % of the hospitalized AD patients were admitted for a first seizure. Recently, in a retrospective study (Rao 2009) concerning elderly subjects with dementia, seizures were described in 3,6%. Neuroimaging revealed vascular lesions in more than a third of subjects. In a prospective study, Scarmeas (2009) evaluated the incidence of new-onset unprovoked seizures in four hundred and fifty three patients with probable AD who had been observed prospectively from mild disease stages. Only 1.5 % developed seizures during 5 years of follow-up. Interestingly, age was inversely linked to the risk of seizures. Brain trauma and brain tumours each accounted for 20% of the cases of epilepsy (Brodie et al., 2009).

Epileptic Seizures in the Elderly: Physical Diagnosis The diagnosis of epileptic seizures in the elderly patient remains challenging for a variety of reasons including the fact that these types of seizures differ from those seen in younger patients and that their clinical presentation can be misleading (Van Cott, 2002).

Seizure Type In contrast to children, the majority of elderly patients who have seizures experience partial seizures, in particular complex partial seizures. Generalized-onset seizures (mainly tonic-clonic seizures) may also occur, as a result of environmental factors (provoked seizures) or as a result of diffuse cerebral change with age or degenerative disease. Status epilepticus, mostly complex partial status epilepticus (Waterhouse and DeLorenzo, 2001) or more rarely ―de novo‖ late onset absence status epilepticus (Thomas et al., 1992) also seem more frequent in this age group.

Clinical Presentation of Seizures Partial Seizures Partial seizures in older patients are less likely to have the classical clinical manifestations suggesting epilepsy. While temporal lobe seizures are the more frequent focal seizures in adult patients, frontal lobe seizures seem particularly common in older patients. This may be related to the fact that cerebrovascular disease is the most common cause of seizures in the elderly, and that strokes usually involve extratemporal regions. In addition, frontal lobe hypothesis in the elderly (Kalpouzos et al., 2008; West, 1996; Willis et al., 2002; Yanase et al., 2005) may be another hypothesis. The consequences of this condition could lead to a state of fragility. Auras are less frequent and when they exist, are often non-specific (dizziness and asthenia). Complex partial seizures are often described as altered mentation,

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periods of staring, unresponsiveness or blackout spells. Automatisms are less frequent whereas inhibitory symptoms seem more frequent. When the clinical presentation is nottypical, post-ictal manifestations such as amnesia and transient confusion are of particular diagnostic interest. A recent study that compared the clinical characteristics and the electroencephalographic (EEG) findings in 25 patients with an inhibitory seizure to those in 252 patients with a transient ischemic attack pointed out that a short temporary speech disturbance with partial amnesia for the event was very suggestive of seizures (De Reuck and Van Maele, 2009). Inhibitory post-ictal symptoms are also frequently described: confusion, a cognitive defect or paresis and may be unusually prolonged often lasting several days (Ramsay and Pryor, 2000). However, confusion is frequent in older patients after prolonged syncope or other significant transient medical manifestations, notably in cases of pre existent cognitive disturbances. Tonic-Clonic Seizures Primary or secondarily generalized tonic-clonic seizures are not clinically different in the elderly (loss of consciousness with an initial tonic phase followed by a clonic phase). But like all tonic-clonic seizures, they may be hard to diagnose when they are un-witnessed. In the absence of a witness, the clinical manifestations may be limited to an unusual tiredness, a history of fall with loss of consciousness, transient amnesia, or prolonged confusion that resolves spontaneously. It has been suggested (Sirven and Ozuna, 2005) that secondarily generalized tonic-clonic seizures are less frequent in older patients because partial seizures are less likely to spread to adjacent areas of the brain, except in patients with Alzheimer‘s disease. Status Epilepticus Non-convulsive status epilepticus is particularly frequent in older patients (Waterhouse and DeLorenzo, 2001) and should be systematically considered as a cause of unexplained coma or a persistently confused state even in the absence of any previous seizure history (Brodie et al., 2009). Clinical manifestations may be more subtle: altered mentation and unusual behaviour, often associated with minor motor manifestations such as focal myoclonic or clonic seizures. In all cases, an EEG is essential for the diagnosis of non-convulsive status epilepticus. ―De novo‖ late onset absence status epilepticus (Thomas et al., 1992) has been described in elderly patients who had abruptly discontinued their anxyolytic or sedative drugs These patients often presented other epileptogenic cofactors including excessive use of other psychotropic drugs, nonpsychotropic treatment, hypocalcemia, hyponatremia, and chronic alcoholism. Typically, absence status epilepticus occured in middle-age patients who had no history of epilepsy. The clinical and EEG presentation were similar to those seen in absence status occurring in patients with prior epilepsy: confusion, altered mentation and generalized spike-wave discharges on EEG. All the episodes were resolved without recurrence with the intra-venous injection of benzodiazepins and the long-term administration of anticonvulsant medication was not required.

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Diagnostic Approach Seizure-Type Approach Instead of a Syndromic Approach In children and younger adults, the International Classification of the Epilepsies and Epileptic Syndromes is a useful tool for classifying epilepsies and has major therapeutic and prognostic implications (1989). The current classification is based on clinical, electroencephalographic and aetiological criteria that provide a definition of distinct syndromes with a common clinical presentation, and prognosis. Epileptic syndromes are classified according to their topography (focal, generalized, or undetermined) and to their presumed aetiology (idiopathic, cryptogenic, or symptomatic). Its widespread utilisation has contributed much to the current understanding of epilepsy. It is now well known that inappropriate anti-epileptic drugs may worsen seizures and that defining the type of epileptic syndrome may provide a useful guide for selecting the appropriate treatment. The syndrome classification also offers major prognostic information that may be useful to practitioners and their patients. The diagnostic approach in the elderly is different from that in children or adult patients, in whom epileptic syndromes can be easily recognized and treated. In the elderly, the syndromic approach is not appropriate for several reasons: 1) Seizures in the elderly are often single (so-called acute or provoked seizures). Numerous epidemiological studies have shown that the incidence of acute or provoked seizures increases linearly with each decade of advancing age (Hauser, 1997; Hauser et al., 1993). 2) Single or recurrent seizures in the elderly are mostly symptomatic and often have multiple concomitant causes. The development of seizures frequently depends on a combination of predisposing, non-modifiable factors such as sequellae from stroke or baseline dementia—and/or precipitating, often modifiable factors—such as hypoglycemia, hyponatremia, the abrupt discontinuation of anxyolytic or sedative drugs, acute stroke or trauma, medications that lower the seizure threshold. 3) Idiopathic generalized epilepsies are exceptional in the elderly It therefore seems more appropriate to reason in terms of seizures-types rather than in terms of epileptic syndromes in older patients.

When should We Consider the Diagnosis of Seizures? Elderly people are often referred to emergency departments or to geriatricians for nonspecific symptoms: acute confusion, falls, loss of consciousness, a focal neurological deficit, sleep disorders, behavioural or psychiatric disorders. Seizures should be systematically considered as a potential cause for these non-specific symptoms. Acute Confusional State Acute confusion or so-called delirium is a common reason for geriatric consultation in the emergency department; they also affect an estimated 14–56% of all hospitalized elderly

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patients (Inouye, 1998). Classically the clinical presentation includes altered mentation with frequent hallucinations or delusions associated with agitation or sedation (Fong et al., 2009). Dementia remains the most prominent risk factor for delirium since two-thirds of all cases of delirium in this age-group occurs in patients with dementia. The causes are often multifactorial and occur in a context of cognitive dysfunction. However the difficulty is that non-epileptic delirium and seizure activity can coexist and share the same causative factors. The clinical history, physical examination and laboratory tests can most often point to the most likely etiologies of acute confusion, such as medications (especially drugs with anticholinergic potential), infections and electrolyte disturbances. However, potential causes of confusion also include acute neurological events and especially seizures with two main clinical presentations: ictal confusion due to non-convulsive status epilepticus or post-ictal confusion that may last as long as 1-2 weeks in an elderly patient, while only lasting a few minutes in younger individuals. In non-convulsive status epilepticus, subtle motor activity may be present and may suggest the diagnosis. In contrast, myoclonus or asterixis are not pathognomonic of seizures and may only reflect a concomitant encephalopathy, resulting in further diagnosis difficulty. In all cases, an EEG is essential and will help establish the diagnosis of non- convulsive status epilepticus. Prolonged post-ictal confusion is more difficult to diagnose and the history is essential. In addition, some clinical symptoms may help distinguish non-epileptic delirium from post-ictal confusion: the existence of complex visual hallucinations, the long duration of the symptom (weeks to months), the fluctuating course of delirium which is often worse at night. Unfortunately, in the vast majority of cases, an EEG will not be very helpful since it often only shows moderate to severe background slowing. Falls Falls pose a serious health problem for older persons since they occur in 30% of adults over age 65 and 40% over age 80. Accidental falls due to extrinsic factors such as poor lighting, throw rugs and other environmental hazards may be easily eliminated. Intrinsic causes of falls are numerous and include changes associated with aging, orthostatic hypotension, many medications, delirium, anaemia, diabetes mellitus, Parkinson's disease, depression, cognitive impairment, syncope and partial complex seizure .(Morley, 2007). Falls linked to mechanisms that maintain postural stability (balance, gait speed and cardiovascular function) can usually be eliminated by a careful cardiovascular and neurological examination. In all cases, the physical examination should focus upon the presence of orthostatic hypotension, testing visual acuity, a hearing assessment, and carotid sinus hypersensitivity which contribute to unexplained falls (De Breucker et al., 2007). The diagnosis of seizures should only be suspected if the fall is associated with impairment or loss of consciousness or amnesia after the fall. In these later cases, further investigations including one or several EEG‘s and an ECG will be mandatory. Loss of Consciousness When loss of consciousness is firmly established, the two primary differential diagnoses are syncope and epilepsy. Syncopal episodes are common amongst older adults; and their causes can either be benign or life-threatening (Mendu et al., 2009). The most frequent etiologies of syncopes are cardiogenic syncope (arrythmias or conduction disturbances), obstructive vascular syncope (aortic stenosis), orthostatic syncope, and neurologically

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mediated syncope (vasovagal syncopes and carotid sinus hypersensitivity). The major priority is to exclude a life- threatening cardiac disease like arythmia or auriculo-ventricular block. The history and clinical symptoms may suggest a syncope rather than a seizure when certain precipitating factors are present like violent pain or fear, head turning or wearing garments with tight-fitting collars, orthostatic hypotension, coughing, micturition or defecation. The absence of prodromal symptoms or prolonged prodromal symptoms including dizziness, nausea or vomiting, vertigo, a brief loss of consciousness without symptoms followed by no amnesia or confusion or a brief episode of confusion or amnesia are also suggestive of syncopes. In the presence of a loss of consciousness associated to myoclonic jerks, tonicclonic seizure have to be differentiated from convulsive syncope. The brief duration of the myoclonic jerks, the existence of vasovagal prodromal symptoms occurring before the loss of consciousness and the absence of prolonged confusion or amnesia after the episode constitutes strong arguments against the diagnosis of seizure. If syncope is suspected, the following procedures seems to be the most useful and cost-effective: carotid sinus massage (auscultation for a carotid artery bruit is mandatory prior to performing carotid sinus massage) or Valsalva maneuver, verifying postural blood pressure and electrocardiogram telemetry. Once again, the difficulty is that syncope and seizures may share common pathophysiological mechanisms and that a prolonged syncope may precipitate a generalized tonic-clonic seizure, leading to diagnostic uncertainty. When doubt persists, both an ECG and an EEG are required. Focal Neurological Deficit As we shall see below, partial seizures in the elderly may be manifested by inhibitory symptoms. The key point here is the duration of focal symptoms: a shorter duration (less than 5 minutes) is suggestive of seizures rather than a transient ischemic attack (Sirven and Ozuna, 2005). However, seizures related to previous strokes may cause prolonged post-ictal deficits mimicking a new episode of stroke. In this case, diffusion MRI is needed to exclude a recurrent vascular episode. Sleep Disorders In the elderly, sleep complaints often coexist with other medical and psychiatric disorders and can be associated with the medications used to treat those illnesses or be related to changes in the patient‘s circadian rhythm or other sleep disorders (Ancoli-Israel et al., 2008). Common sleep disorders that can mimic frontal lobe seizures include periodic limb movements during sleep, the rapid eye movement sleep behaviour disorder and sometimes the restless legs syndrome (Martin et al., 2000). Patients who suffer from periodic limb movements during sleep or the rapid eye movement sleep behaviour disorder typically complain of insomnia and excessive daytime sleepiness and when they have a bed partner, he or she reports the sudden onset of brief leg kicks, sometimes associated with shouting or swearing in cases of the rapid eye movement sleep behaviour disorder. The prevalence of these sleep-disorders increases with age and they may be associated with sleep disorders of breathing. Clinically, they must be distinguished from nocturnal frontal lobe seizures that are often characterized by sudden and violent automatisms during sleep. However, nocturnal frontal lobe seizures usually begin at an earlier age and often cluster. If the age of onset of the sleep disorder cannot be clearly established, the clinical diagnosis will require nocturnal

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polysomnography. The restless-legs syndrome is a related disorder in which patients complain of an unpleasant sensation in their legs which is only relieved by movements. It does not really mimic seizures and the diagnosis is based on history.

Diagnostic Tools Common Diagnostic Evaluation An understanding of the features that distinguish epilepsy from other disorders is the key point in establishing the diagnosis of seizures. In adult patients, the diagnosis is mainly based on a thorough history obtained from both the patient and available witnesses. A comprehensive neurologic examination may also be useful in some cases. Table 1. General diagnostic approach

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The typical diagnostic evaluation should also include routine serum laboratory tests, EEG and cerebral MRI. In older patients, additional features must be taken into account: the absence of a reliable history (cognitive impairment; limited history available and no witness), seizures with a non-specific presentation (confusion, falls, loss of consciousness, sleep disorder), and common disorders that may clinically imitate seizures and that are potentially more frequent in this age group (syncope, transient ischemic attacks, cardiovascular disease). In these situations, additional tests (especially cardiac and cerebrovascular assessments) are often necessary in elderly people (see table 1). Table 2. Diagnostic tool based on a combination of criteria for the diagnosis of seizures in the elderly Major Criteria

Minor criteria

- Impairment of consciousness with automatisms - Confusional state with sudden onset and end - Rhythmic muscular contractions in a focal territory - Paroxysmal behavioral disorder associated with a focal neurological sign - Prolonged confusion - Prolonged or aggravated focal neurological deficit - Bite of the lateral side of the tongue

- Impairment of consciousness - Diurnal or nocturnal paroxysmal movement disorders including diffuse myoclonias - Isolated paroxysmal behavioral disorder - Focal neurological deficit

History

- Alzheimer disease - Recurrence of stereotyped and identical episodes

Precipitating factors

Benzodiazepines withdrawal Alcohol withdrawal Hypoglycemia

History of epilepsy Alcohol abuse Dementia other than Alzheimer disease - Iatrogenicity (especially psychotropic drugs) Acute metabolic disorder

Clinical signs

Certainty Criteria - Generalized tonic-clonic seizure with a witness

Post-ictal signs

EEG Imaging

- Seizure on EEG

- Spikes and wave-spikes - Cortical focal lesion (recent or sequellae)

- Unusual asthenia - Diffuse myalgia

- Focal slow waves - Other cerebral lesions

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Specific Diagnostic Evaluation In a recent study (Dupont et al., 2009), we proposed a diagnostic scale to help physicians in clinical practice recognize seizures better and to orient elderly patients more efficiently. A multidisciplinary group composed of neurologists and geriatricians worked together to elaborate an electro-clinical score designed to help establish the diagnosis of seizures in elderly patients in different clinical settings. The diagnostic algorithm was based on clinical, electroencephalographic and radiological criteria (certainty criteria, major criteria and minor criteria explicitly linked to the supporting evidence and graded according to the strength of that evidence (see table 2). Each patient complaining of impaired consciousness, diurnal or nocturnal paroxysmal movement disorders, paroxysmal behavioral disorders, a transient focal neurological deficit, a fainting spell, a fall, confusion, unconsciousness, nocturnal agitation or psychiatric-like disorders who has undergone an EEG and/or a CT-scan or a MRI can be evaluated by this diagnostic algorithm. The algorithm classified patients into four categories: certain epileptic seizures, highly probable epileptic seizures, possible epileptic seizures, improbable (unlikely) epileptic seizures. Of course, this diagnostic tool requires an additional prospective validation (retrospective validation has already been performed) but similar diagnostic approaches should be encouraged

Video-EEG Video-EEG monitoring is the gold standard method for diagnosis of seizures. This method is clearly underused in the elderly population, partly because the elderly represent a small percentage of admissions for epilepsy monitoring units and partly because these monitoring units are usually reserved for the presurgical evaluation of refractory younger epileptic patients. There is a real need to develop specific video-EEG monitoring units located in geriatric units and allocated to the diagnosis of seizures or other events mimicking seizures.

Pitfalls Cognitive dysfunctionA decline in cognitive function is common with advanced age, and may represent an additional difficulty for the diagnosis of seizures (see chapter below). In contrast, seizures are a frequent manifestation occurring during the course of dementia, especially Alzheimer‘s disease and repeated temporal lobe seizures may mimic a dementia. Psychogenic Features It must be kept in mind that even older people may encounter psychogenic events. In a recent study, (Abubakr and Wambacq, 2005)) studied the results of video-EEG monitoring in elderly patients admitted for diagnosis of paroxysmal events or characterization and localization of supposed seizures. Among the 58 patients admitted, six had psychogenic nonepileptic seizures, 26 had physiological events; only 26 patients were diagnosed with real epileptic seizures. Psychogenic non-epileptic seizures typically occur in young females and are considered to be rare in the elderly. Nevertheless, recent studies (Lancman et al., 1996; McBride et al., 2002) have revealed that psychogenic non-epileptic seizures were consistently

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found in older people who underwent video-EEG monitoring. The true prevalence of psychogenic non-epileptic seizures is unknown in the elderly and requires further prospective studies. Social or Familial Isolation The key to the diagnosis of a seizure is a witnessed description of the episode (Sirven and Ozuna, 2005). Unfortunately, elderly people are more likely to have unwitnessed seizures since they no longer work, are less active socially and often live alone. EEG There are two pitfalls with EEG interpretation in the elderly: firstly benign EEG changes are frequently associated with normal aging and may be misinterpreted as indicating a seizure tendency (Van Cott AC, 2002) and secondly, pathological EEG figures such as Periodic lateralized epileptiform discharges (PLEDs) reflecting underlying neurological diseases may be present and confused with epileptic discharges. Benign EEG Changes Associated with Aging The EEG‘s of elderly individuals have a high incidence of intermittent focal slowing, especially in the left temporal region of the brain. In addition, three benign epileptiform EEG variants that may be confused with epileptic discharges are more frequent in the elderly population: the so-called wicket spikes (spikes occurring in both the awaked state and during light sleep with a frequency of 6-11 Hz, usually in short runs (wicket rhythm) but also as single sharp transients; small sharp spikes (SSSs) (also known as benign epileptiform transients of sleep, SSSs which occur in light sleep (stages I and II of non-rapid eye movement sleep), usually sporadically) and subclinical rhythmic electrographic discharge in adults or SREDA (uncommon pattern observed mainly in older persons (>50 y) which may occur at rest or during drowsiness. SREDA superficially resembles an EEG seizure pattern. The frequency is typically 5-6 Hz and the location is widespread or bilateral and predominately posterior. The morphology is seizure-like (ie, rhythmic sharply contoured theta) and the abruptonset and termination may help distinguish SREDA from an EEG seizure. The duration ranges from 20 seconds to minutes (average 40-80 s)) (Benbadis and Rielo, 2008; Gibbs and Fa, 1952). PLEDs (PLEDs) are a well-defined electroencephalographic entity which has been recognized for the past four decades (Fitzpatrick and Lowry, 2007). PLEDs have been associated with both partial and generalized seizures, and typically with status epilepticus but also with a variety of conditions including cerebrovascular accidents, viral encephalitis, subdural hematoma, metabolic abnormalities, mitochondrial encephalomyopathy, diffuse neurocysticercosis and neurosyphilis. Their presence is not pathognomonic of epilepsy.

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Epilepsy in Dementia AD is Associated with an Increased Risk of Seizure In AD, the nature of the underlying mechanism for unprovoked seizures remains unclear. The role of the accumulation of amyloid plaques, neurofibrillary tangles and extensive neuronal cell loss in limbic and association cortices has been suspected (Armon et al., 2000; Forstl et al., 1992; Mendez and Lim, 2003; Palop et al., 2007). However, clinical studies which compared AD patients with and without seizures reported no more differences with respect to other medical disorders they had, the medications they took or the degree of focal pathology (Mendez et al., 1994; Romanelli et al., 1990) The role of a disproportionate neuronal degeneration in different brain areas has been postulated to be the neuropathological substrate of seizures in AD.(Forstl et al., 1992) In fact, for 6 patients with generalized motor seizures among 56 with autopsy-proven AD, (Forstl et al., 1992) reported significantly reduced pyramidal cell counts in the parietal and hippocampal areas. However, cell-loss may not be the only pathological basis for seizures in AD. The accumulation of amyloid plaques may also play a role as it was reported by Palop 2007, in human amyloid precursor protein (hAPP) transgenic mice (Palop et al., 2007). hAPP mice with high Aß levels have spontaneous nonconvulsive seizure activity in cortical and hippoocampal networks, suggesting the excitatory effect of Aß on these networks. Additional evidence for the role of neuropathological lesions is the report of seizures in familial AD, with early onset of the disease, linked to mutations in presenilin-1 (Singleton et al., 2000; Takao et al., 2001) (Shrimpton et al., 2007; Velez-Pardo et al., 2004) and with APP duplications (Cabrejo et al., 2006). A relationship between cell loss in the CA1 field of the hippocampus, a high density of A plaques and neurofibrillary tangles, and seizures have been postulated in patients with familial AD. So hippocampal lesions may be a susceptibility factor. However it does not constitute the only explicative factor because it is present in all subjects. Neuronal death may consequently affect GABAergic inhibitory circuits and the balance between excitation and inhibition which may induce seizures. (Mendez et al., 1994) In addition, seizures can also result from non-AD lesions like cerebrovascular lesions (Luhdorf et al., 1986b) or metabolic or neurotransmitter disorders (Mendez et al., 1994), in addition with polymedication, co-morbidities, behavioural symptoms with the use of psychotrope treatment Diagnosis of Seizures in Dementia The diagnosis of seizures and epilepsy may be particularly difficult in elderly patients with dementia. In AD generalized seizures are common and presumably generalize secondary to a partial seizure focus (Hauser et al., 1986; McAreavey et al., 1992; Mendez et al., 1994; Risse et al., 1990). Complex partial status epilepticus (Armon et al., 2000) and myoclonus, often a late manifestation (Hauser et al., 1986), have been reported. In older people with dementia, clinicians may mistakenly consider seizure activity (particularly complex partial seizures) to be symptomatic of the underlying dementia (Hommet et al., 2008). Indeed, partial seizures may result in a decline in cognitive functions, a worsening in the performance of activities of daily living and episodes of confusion.(Rabinowicz et al., 2000). It can also produce non-specific symptoms like dizziness, altered mental status or unresponsiveness. The diagnosis of a seizure is essentially a clinical diagnosis, based on a reliable history and is more difficult in demented patients since they often remember little of the episode.

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Accordingly, corroborative evidence from the care-giver or an observer is important. The physical examination should be centered on the past medical history and the neurological and cardiovascular systems. Some specific features should be kept in mind in aging and dementia. Post- ictal confusion may last hours or even days (Ramsay et al., 2004). Focal motor deficits may last several hours, erroneously suggesting ischemic stroke and tongue-biting and urinary incontinence may be absent.(Stephen and Brodie, 2000) It is important to look for the use of medications that lower the seizure threshold but may cause acute seizures: typical and atypical anti-psychotics usually prescribed in AD (Centorrino et al., 2004), tricyclic antidepressants, theophylline and antibiotics like quinolones. A few seizures have been reported during treatment with cholinesterase inhibitors (Babic and Zurak, 1999; Piecoro et al., 1998). Just when during the course of AD seizures first occur has not been established. According to some authors, seizures occur in the later stages, 6 or more years after the onset of the dementia (Mendez et al., 1994; Piecoro et al., 1998; Risse et al., 1990) and the incidences of seizures increases with the severity of the dementia. (Hesdorffer et al., 1996; McAreavey et al., 1992; Mendez and Lim, 2003). Other authors have reported seizures at any time during the course of the illness (Hauser et al., 1986) including the early stage (as early as 3 months after the onset of AD) (Hesdorffer et al., 1996; Lozsadi and Larner, 2006). Furthermore, researchers have not found association between seizures and patient-age at the onset of AD nor any prior EEG findings (Romanelli et al., 1990). More recently, Amatniek et al (2006) evaluated its cumulative incidence and identified co-morbid medical and psychiatric baseline conditions that can influence the risk of unprovoked seizures in mild AD patients who were prospectively followed at 6-month intervals (median follow-up period of nearly 6 years). The cumulative incidence of unprovoked seizures at 7 years was almost 8%. Independent predictors of unprovoked seizures were younger age, African-American ethnic background, more severe dementia and focal epileptiform activity on EEG. More recent studies confirmed that younger age is associated with higher risk of seizures in AD (Amatniek et al., 2006; Scarmeas et al., 2009).

Seizures and Epilepsy in Non Alzheimer Dementia The risk of seizure is not limited to AD but there are little data concerning other types of dementia (Volpe-Gillot, 2007). In frontotemporal dementia, Nearly et al (1998) and Sperfeld et al., (1999) reported a novel phenotype characterized by the early onset of rapidly progressive frontotemporal dementia and parkinsonism with epileptic seizures linked to chromosome 17 (Foster et al., 1997). Unfortunately, there are no data about the prevalence of epileptic disorders in Lewy Body Disease. Vascular disease is the main aetiology of epilepsy in theelderly. However, there are no data on epilepsy in vascular dementia. Vascular dementia refers to various vascular diseases according to aetiology (ischemic or haemorrage), or topography (cortical/infracortical). All these pathologies are called vascular cognitive impairment (VCI) describing cognitive impairment with or without dementia in relation to vascular disease (Moorhouse and Rockwood, 2008; O'Brien et al., 2003). Many studies have addressed post-stroke epilepsy (Granger et al., 2002; Hauser and Kurland, 1975).

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The overall incidence of cerebrovascular-related seizures is estimated to be between 3.6 to 8.9% (Benbir et al., 2006; Reith et al., 1997). Some authors have individualized predictors of late-onset seizures and epilepsy such as the severity of the initial neurological impairment (Bladin et al., 2000; Reith et al., 1997) and the presence of a large cortical infarct on brain CT scan (Burn J, 1997; Lamy et al., 2003; Reith et al., 1997; So et al., 1996).The role of subcortical lesions as an aetiological factor of seizures in the elderly is questionable (De Reuck et al., 2007). Perhaps subcortical vascular lesions leads to fraily condition. Some specific conditions which can also be associated dementia and seizures must be considered. In Hashimoto encephalopathy (HE) authentic epileptic seizures (primary or secondary generalized seizures) have been reported in HE patients even if status epilepticus has only rarely been described. Various EEG abnormalities have also been described and usually non-specific (diffuse slowing, mesial temporal lobe epileptic foci during ictus, diffuse slowing with triphasic discharges) (Archambeaud et al., 2001). In the initial presentation of sporadic Creutzfeldt-Jakob disease (CJD), seizures rarely occur but are often resistant to AEDs (Aronyk et al., 1984; Lee et al., 2000). They can be in the form of epilepsia partialis continua (Lee et al., 2000; Parry et al., 2001; Rees et al., 1999) or generalized convulsive status epilepticus (Neufeld et al., 2003). Depending on the disease stage, the EEG can show non-specific findings such as diffuse slowing and frontal rhythmic delta activity in the early stages, disease-typical periodic sharp wave complexes (lateralized or generalized) or PLEDs. Unprovoked seizures have significant consequences on the prognosis of dementia: aggravation in dementia in terms of loss of cognitive abilities, particularly language (Volicer et al., 1995), reduced autonomy, greater risk of injury and a higher mortality rate (Armon et al., 2000; Chandra et al., 1986; Volicer et al., 1995). Seizures may have serious consequences like falls, fractures, intracranial haemorrhages and long-lasting confusion, which is particularly worrisome in dementia. Finally, patients with dementia are very vulnerable to AED (Griffith et al., 2006; Kwan and Brodie, 2001). After a single seizure, AEDs should be only started after the diagnosis has been clearly established and when signs suggesting an anatomical localization are present or when the risk of recurrence is high.

Treatment Epilepsy should be treated with appropriate antiepileptic drugs. In addition, elderly patients who have experienced only one seizure at the time of referral, but who have a high risk of recurrence (for example, patients who have a demonstrated brain lesion related to the seizure) should also receive treatment (Loiseau et al., 1990). However, the antiepileptic drugs chosen should be considered with a global approach. The main goal of management should be the maintenance of autonomy by case by case assessment. A single seizure has a negative effect on the quality of life more than one year after its occurrence even when no etiology has been found (Pedersen, 2002). Elderly people with epilepsy have more trouble sleeping and a higher prevalence of anxiety and depressive disorders when compared to a population of the same age without epilepsy (Haut et al., 2009). However, one study found that seniors with epilepsy did not have poorer health-related quality of life when compared with a population of younger patients with epilepsy (Laccheo et al., 2008). At the present time, we lack reliable

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instruments for studying the multiple factors affecting the quality of life in elderly people with epilepsy (Devinsky, 2005). Nevertheless, the first step should always be to carefully analyze the lifestyle of a given patient in order to assess the potential impact of seizures on his or her daily activities (walking, driving). The physician needs to explain the meaning and consequences of the diagnosis of epilepsy and offer appropriate counseling. Thus, a multispecialty, multi-professional approach to care would seem most appropriate (Brodie et al., 2009).

Choice of Antiepileptic Drug A growing body of clinical recommendations based on systematic literature review and expert opinion advocates the use of the newer agents and avoidance of phenobarbital and phenytoin (Pugh et al., 2008). In a practical way, numerous factors should be assessed before prescribing: co-morbidities, pharmacokinetics, poly-therapy and potential drug interactions, side effects, and expected compliance.

Co-Morbidities In the Veterans study which enrolled more than 500 patients (Ramsay et al., 2004), 64% of the patients presented clinically with hypertension, 52% had experienced a stroke, half of them presented with symptomatic cardiac disease, 27% of the patients were diabetic, and 22% had a history of cancer. In addition, 35% of the patients had mild cognitive impairment (patients with Alzheimer disease were excluded from this study). Special consideration should be given to the older population where polypathology is common. Indeed, some AEDs can aggravate preexisting conditions, for example phenytoin can aggravate neuropathy (Yoshikawa et al., 1999) while carbamazepine and phenytoin can lead to cardiac bradyarrhytmia. Weight increase, which is often related to AEDs (pregabalin, valproate) can indirectly decompensate cardiac failure.

Pharmacokinetics Various body organs undergo changes with increasing age that may have effects on the pharmacokinetics of AEDs (Kramer, 2001). Despite the widespread use of AEDs in the elderly, there is limited information on their pharmacokinetics in this age group (Patsalos et al., 2008). A decrease in the absorption area, reduced perfusion, and motility in the digestive tract may have unpredictable effects. Changes in liver function can modify the metabolism of some AEDs and the rate in protein binding. This last characteristic is important to take into account because a low level of albumin due to malnutrition is frequently observed in frail elderly patients. If the AED is highly linked to protein, the risk of toxic side effects is major. However, the most important age-related change in kidney function is a reduction in glomerular filtration and consequently, drugs eliminated predominantly by the kidneys (gabapentin and levetiracetam) should be used cautiously and at a reduced dosage (Perucca,

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1999). In general, most AEDs should be used at a reduced dosage in order to avoid toxic side effects andtreatment should be individually adapted to each patient.

Poly-medication and Drug-interactions The mean number of co-medications reported in the Veterans study was 6.7 (0-15) and a quarter of the patients were taking 15 or more prescribed drugs (Ramsay et al., 2004). The increase in the mean number of concomitant prescription medications in people with epilepsy ranged from 2.41 for men aged 18-34 years to 7.67 for men aged 85+ years and from 4.04 for women aged 18-34 years to 7.05 for women aged 85+ years (N= 11188), (Gidal et al., 2009). The most commonly used non-AED medications with the potential for adverse drug interactions were reductase inhibitors (statins), calcium channel blockers and selective serotonin reuptake inhibitors (Gidal et al., 2009). Overall, carbamazepine, phenytoin, gabapentin and valproate were the most commonly used AEDs in this study and were prescribed to between 19% and 61% of all patients across the different age group (Gidal et al., 2009). Today, phenytoin remains the most commonly used antiepileptic drug in the USA (Pugh et al., 2008). Some drugs can lower the seizure threshold and increase the risk of seizures (mainly antidepressant and antipsychotic drugs (Spina and Perucca, 2002). However, the most important problem is related to enzyme induction: phenobarbital, phenytoin, and carbamazepine which increases the metabolism of other prescribed drugs leading to an increased risk of toxicity. For example, it is very difficult to manage a co-prescription of warfarin with any of the above-mentioned inducer AEDs but warfarin was prescribed to more than 10% of the patients in the study (Gidal et al., 2009). Among the cardiovascular medication often prescribed, statins are metabolized in the liver and may interact with AEDs (Levy and Collins, 2007). The deleterious effects of older AEDs on bone density are wellknown; they increase the risk of fracture due to osteomalacia (Tallis et al., 2002). Nonspecific side effects of AEDs (mental slowing, sedative effects and confusion) can be unpredictably exaggerated by polymedication. The specific risk of hyponatremia related to oxcarbazepine and carbamazepine must be kept in mind when diuretics are prescribed (Brodie et al., 2009).

Compliance In a recent paper (Ettinger et al., 2009), adherence to AED in elderly patients with epilepsy (N=1278) during a one-year period using the medication possession ration (MPR= sum of days supplied in observation period / days in the observation period) assuming that a MPR < 0.8 defined non-compliance. ; 41% of the 1278 patients were non-compliant. Seizures occurred in 12,1% of non-adherers versus 8,2% of adherers (p= 0,02) and health care costs were increased.

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Drug Trials in the Elderly Two multicentre, randomized, double-blind studies comparing lamotrigine and carbamazepine have been published. In the first Brodie et al., (1999), found that lamotrigine was as effective as carbamazepine (standard formulation) but much better tolerated. In the second study (Saetre et al., 2007) with an identical design, lamotrigine was compared to a controlled-release formulation of carbamazepine; the authors found no difference in efficacy or tolerance. In the Veterans Administration study by Rowan et al., (2005), lamotrigine gapapentine and carbamazepine (standard formulation) were compared in a multicentre, randomized, double blind, double dummy, parallel study of 593 elderly subjects with newly diagnosed epilepsy. The primary outcome measure was retention in trial for 12 months. There were no significant differences in the seizure-free rate at 12 months but drop-out rate due to adverse events were lamotrigine: 12,1%, gabapentine: 21,6%, and carbamazepine: 31% (p=0,001). Consequently lamotrigine and gabapentine should be considered as initial medication for older patients with epilepsy. Open studies have been published on numerous new drugs used in mono-therapy: lamotrigine (Giorgi et al., 2001), topiramate (50 mg/day) (Ramsay et al., 2008), levetiracetam (Belcastro et al., 2008)), oxcarbazepine (Kutluay et al., 2003) but no demonstrated differences in efficacy have been found amongst all the available AEDs.

What to Do in Everyday Clinical Practice? The choice of an AED should be individually adapted to each patient according to the physical status of the patient, co-morbidity, potential drug interactions and expected adherence (which mainly depends on the patient‘s cognitive status and family support). The rule should be ―start low and go slow‖ (Brodie et al., 2009) using a mono-therapy. High level clinical evidence is lacking but the use of lamotrigine as first-line treatment is supported by a controlled study. The daily maintenance dose of lamotrigine is 100mg/day (50 mg twice daily). Potential side-effects during the titration period are skin rash and unpredictable sedation. Expected side-effects when the maintenance dose has been attained are headache and insomnia. Levetiracetam also has a good profile: fast titration, no drug interactions and good tolerance). The daily maintenance dose is 1000mg/day (500mg twice daily). Sedation as well as behavioral problems can occur and since the drug is totally excreted by the kidneys, its use requires careful assessment of renal function If a first drug is poorly tolerated, another should be quickly substituted. Treatment is usually for an indefinite period. In all of the cases, particular attention should be paid to side effects and general tolerance needs to be regularly assessed.

Conclusion Despite their high prevalence, epileptic seizures are often overlooked or misdiagnosed in elderly people. Recognizing and correctly diagnosing seizures in this age-group is sometimes a challenge. Aspects that are particularly relevant to the elderly population include: being

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aware of the usual and unusual clinical presentations of seizures in this age-group, rapidly considering epilepsy when elderly people are referred to emergency departments or geriatricians for confusion, falls, behavioral or psychiatric disorders and that obvious differential diagnoses such as metabolic or toxic disturbances, orthostatic hypotension or syncope also have to be eliminated. In addition, a multidisciplinary approach should be encouraged in order to improve access to useful diagnostic tools such as EEG or video-EEG monitoring. The development of validated diagnostic tools specifically designed for this particular population should be encouraged. AD patients have an increased risk for epilepsy and when both disorders are present, they constitute a complex association with a potentially major psychosocial impact. AEDs should only be started after a diagnosis is clearly established. Newer AEDs seem interesting when compared to the first generation. Even if the newer AEDs offer significant advantages over older medications, clinical trials evaluating their use in the elderly and dementia are needed.

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population-based cohorts. Neurologic Diseases in the Elderly Research Group. Neurology, 54: S4-9. Loiseau J, Loiseau P, Duche B, Guyot M, Dartigues JF, Aublet B (1990) A survey of epileptic disorders in southwest France: seizures in elderly patients. Ann. Neurol, 27: 232-7. Lozsadi DA, Larner AJ (2006) Prevalence and causes of seizures at the time of diagnosis of probable Alzheimer's disease. Dement. Geriatr. Cogn. Disord, 22: 121-4. Luhdorf K, Jensen LK, Plesner AM (1986a) Epilepsy in the elderly: prognosis. Acta Neurol. Scand, 74: 409-15. Luhdorf K, Jensen LK, Plesner AM (1986b) Etiology of seizures in the elderly. Epilepsia, 27: 458-63. Martin J, Shochat T, Ancoli-Israel S (2000)Assessment and treatment of sleep disturbances in older adults. Clin. Psychol. Rev, 20: 783-805. McAreavey MJ, Ballinger BR, Fenton GW (1992) Epileptic seizures in elderly patients with dementia. Epilepsia, 33: 657-60. McBride AE, Shih TT, Hirsch LJ (2002) Video-EEG monitoring in the elderly: a review of 94 patients. Epilepsia, 43: 165-9. Mendez M, Lim G (2003) Seizures in elderly patients with dementia: epidemiology and management. Drugs Aging, 20: 791-803. Mendez MF, Catanzaro P, Doss RC, R AR, Frey WH (1994) 2nd. Seizures in Alzheimer's disease: clinicopathologic study. J. Geriatr Psychiatry Neurol 1994; 7: 230-3. Mendu ML, McAvay G, Lampert R, Stoehr J, Tinetti ME (2009) Yield of diagnostic tests in evaluating syncopal episodes in older patients. Arch. Intern. Med, 169: 1299-305. Moorhouse P, Rockwood K (2008) Vascular cognitive impairment: current concepts and clinical developments. Lancet Neurol, 7: 246-55. Morley JE (2007) Falls--where do we stand? Mo. Med, 104: 63-7. Neary D, Snowden JS, Gustafson L, Passant U, Stuss D, Black S, et al (1998) Frontotemporal lobar degeneration: a consensus on clinical diagnostic criteria. Neurology, 51: 1546-54. Neufeld MY, Talianski-Aronov A, Soffer D, Korczyn AD (2003) Generalized convulsive status epilepticus in Creutzfeldt-Jakob disease. Seizure, 12: 403-5. O'Brien JT, Erkinjuntti T, Reisberg B, Roman G, Sawada T, Pantoni L, et al (2003) Vascular cognitive impairment. Lancet Neurol, 2: 89-98. Palop JJ, Chin J, Roberson ED, Wang J, Thwin MT, Bien-Ly N, et al (2007) Aberrant excitatory neuronal activity and compensatory remodeling of inhibitory hippocampal circuits in mouse models of Alzheimer's disease. Neuron, 55: 697-711. Parry J, Tuch P, Knezevic W, Fabian V (2001) Creutzfeldt-Jakob syndrome presenting as epilepsia partialis continua. J. Clin. Neurosci, 8: 266-8. Patsalos PN, Berry DJ, Bourgeois BF, Cloyd JC, Glauser TA, Johannessen SI, et al. (2008) Antiepileptic drugs--best practice guidelines for therapeutic drug monitoring: a position paper by the subcommission on therapeutic drug monitoring, ILAE Commission on Therapeutic Strategies. Epilepsia, 49: 1239-76. Pedersen B (2002) Discussion group: seizures dans epilepsy in elderly people. Impact on quality of life. Epilepsia, 43(Suppl8): 9. Perucca E (1999) The clinical pharmacokinetics of the new antiepileptic drugs. Epilepsia, 40 Suppl 9: S7-13.

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In: Society, Behaviour and Epilepsy Editors: Jaya Pinikahana and Christine Walker

ISBN 978-1-61761-001-1 © 2011 Nova Science Publishers, Inc.

Chapter XVII

Use of Complementary and Alternative Medicine for Treatment of Epilepsy Reyna M. Durón 1 and Kenton R. Holden 2

1. Centro Médico Lucas, Tegucigalpa, Honduras, Central America, Professional Advisory Board, Epilepsy Foundation of Greater Los Angeles 2. Departments of Neurosciences (Neurology) and Pediatrics, Medical University of South Carolina (MUSC), Charleston, SC, USA, and Greenwood Genetic Center (GGC), Greenwood, SC, USA

Abstract Throughout the world, many people use complementary and alternative medicine (CAM) to treat epilepsy. One common CAM used is herbal medicine. Although many plant ingredients are used in modern medications and some appear to have anticonvulsant properties, there are no evidence-based clinical studies that any control epileptic seizures. Difficulties with plant studies arise because concentrations of active principles can vary according to growing conditions. Some are also known to act on the cytochrome p450 system to alter plasma anti-epileptic drug (AED) levels, possibly detrimentally. Literature on other CAMs used in epilepsy is readily available. Acupuncture studies in animals reveal antiepileptic effects and are likely secondary to altering neurotransmission. Prayer, music, and relaxation techniques are also frequently used CAMs. Vitamins and minerals can help prevent some secondary effects of AEDs. Ketogenic and Atkins diets have been found to be useful evidence-based CAM treatments in refractory epilepsies of children and adults. Surveys from Asia, Europe, and the United States have shown that 35 to 72%  Correspondence: Kenton R. Holden, M.D., Professor, Departments of Neurosciences (Neurology) and Pediatrics, Medical University of South Carolina (MUSC), Charleston, SC, USA and Senior Clinical Research Neurologist, Greenwood Genetic Center (GGC), Greenwood, SC, USA. E-mail: [email protected] or [email protected].

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of patients with severe or refractory neurological disorders use CAM, although many do not report it to their physicians. This percentage is similar for patients with epilepsy, who commonly switch to CAM or combine CAM with prescribed medications. The chance that CAM will be used for an illness appears related to experience with CAM use in the past and a belief in the safety of CAM use. Patients with advanced education degrees beyond upper school appear to have a higher prevalence of CAM use. Commonly patients think that CAMs are safer, more ―natural‖, and lack secondary adverse effects. However, most CAM use is likely precipitated by dissatisfaction with failed evidence-based medical treatments, lack of access to or unavailability of AEDs, inadequate education about epilepsy, insufficient resources, and cultural beliefs. Cultures which believe in diseases caused by ―the supernatural‖ use traditional medicine/CAM as initial therapy rather than of modern medical therapies. CAM use to treat epilepsy has five possible outcomes to the patient. First, their effect is neutral or not harmful and/or they do not interact with an AED or other modern epilepsy treatments. Second, their effect is detrimental to the patient because of direct effects or undesired interactions. Third, they are not effective as an AED, but they do promote general health. Fourth, their effect is unknown, and, therefore, most likely risky. Fifth, they are effective as an AED. CAM use in epilepsy patients often is related to non-adherence to evidencebased AED treatment. Because of the wide range of CAM effects, patients and medical providers need to discuss openly the use of CAM in the treatment of epilepsy. A comprehensive epilepsy education program is needed initially to change non-adherent behaviors and to close the treatment gap for epilepsy. This must go hand-in-hand with improved access to resources and treatment. At the same time, clinical translational research needs to be promoted to determine newer specific and adjuvant therapies for epilepsy, some of which may prove to be CAMs currently in use.

Introduction Many people over the world use complementary and alternative medicine (CAM) to treat acute and chronic illnesses. Since neurological diseases are common (epilepsy, stroke, head trauma, developmental, etc.) and many times do not respond to conventional therapy, CAMs are commonly used. Epilepsy is no exception. Surveys from Asia, Europe, and the United States have shown that 35 to 72% of patients with severe or refractory neurological disorders use CAM, although many do not report it to their physicians. [Barnes et al, 2004 This percentage is similar for patients with epilepsy, who commonly switch to CAM or combine CAM with prescribed medications. [Durón et al, 2009 Traditions, beliefs, and psychosocial factors contribute to treatment practices of epilepsy. These factors appear to differ between developed and developing nations. Even when people migrate from underdeveloped to developed countries, they tend to retain cultural beliefs and treatment practices about epilepsy similar to those in their home countries. Individuals who believe in non-scientific causes of epilepsy tend to initially use complementary and alternative medical therapies. Sometimes, this can lead to risks to health and to diminished quality of life. Epilepsy is a common worldwide health problem; however the etiological causes can differ between developed and developing nations. Recent reports conclude that undeveloped regions, such as parts of Latin America, Asia, and Africa, have higher epilepsy prevalence rates as a result of "preventable" epilepsies.[Medina et al, 2005; Bergen, 1998 Studies in countries like Honduras, Central America also reflect the impact of patient and community perceptions about epilepsy. When 2,221 persons from the Honduran Miskito tribe were

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evaluated during a population-based epilepsy prevalence study and compared to hospital and governmental clinic records, it was found that the epilepsy prevalence was much lower than expected [Varela et al, 2002. It was also observed that there was a strong tendency to explain epilepsy using magical and religious terms and to also use traditional treatments. This study serves as an example of how carefully data needs to be obtained and results reported in epidemiological studies, particularly in certain populations. The social interaction of epilepsy patients with their community and the stigma associated with epilepsy in their community may play a major role in the outcomes of any specific reports on the use of modern medications or CAMs for epilepsy. Additional anthropological studies on epilepsy in different parts of the world have reported that people with epilepsy are frequently believed to be unable to carry on a normal profession or to be independent in everyday tasks [Devinski and Cramer, 1993; Dodrill, 1993. Psychosocial problems stemming from the epilepsies vary among countries and ethnic groups [Lai and Lai, 1991; Pal et al, 2008; Collins, 1994; Elferink, 1999; Durón et al, 2001. Earlier literature from African countries, for example, reported that epilepsy has frequently been treated as an abomination, and there is evidence that in many areas it continues to be abhorred and highly stigmatized [Jilek-Aall et al, 1997; Osuntokun, 1977. Belief remains strong in many regions of the world that only traditional healers are capable of divining the causes and treating the condition. Literature indicates that in rural areas, relatives and family members sometimes accept seizure disorders as a misfortune and do not accept modern medical attention. Use of herbs and non-pharmacological CAMs have been reported by patients everywhere. Since CAM use is common in epilepsy patients, doctors and other allied health personnel should make an effort to learn about it in order to instruct patients, and, if applicable, to rationally use those measures that could be helpful for well being and stress reduction, if not for seizure control. Some complementary treatments are currently helpful in preventing chronic AED adverse effects such as anemia, osteopenia, osteoporosis, and teratogenesis.

Reasons for Cam Use in Epilepsy In developed countries, the search for alternative treatments is initiated primarily due to lack of seizure control from modern AEDs. In addition, CAM use is increased because the most commonly used AEDs can have adverse effects such as allergic reactions, gingival hyperplasia, gastrointestinal disturbances, osteopenia or osteoporosis, bone marrow toxicity, liver toxicity, nephrotoxicity, neurological symptoms (ataxia, dizziness, diplopia, somnolence), cognitive, mood, and behavioral disturbances, endocrine dysfunction, and teratogenicity. Other non-pharmacological evidence-based treatments of epilepsy such as the Ketogenic diet, vagal nerve stimulator, and epilepsy surgery have their own limitations and complications, and many in the world cannot access these evidence-based antiepileptic therapies. Cultures which believe in diseases caused by ―the supernatural‖ inherently feel the need for traditional medicine/CAM rather than modern medicine. Although probably more likely used in developing countries, the chance that CAM will be used for an illness appears related

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to the patient‘s experience with CAM use in the past and a belief in the safety of CAM use. It is of interest that in developed countries, patients with advanced education degrees appear to have a higher prevalence of CAM use. Commonly patients interpret that CAM options are safer because they are ―natural‖. They consider CAMs to lack secondary adverse effects although very few controlled evidence-based studies support this premise. There are some patients who use herbal and dietary supplements for health promotion rather than to specifically treat their epilepsy. Other than that group, however, the ―treatment gap‖ related to evidence-based epilepsy treatment primarily arises from the following factors: dissatisfaction with failed evidence-based medical treatments, lack of access or unavailability of AEDs, inadequate education about epilepsy, insufficient resources, and regional and cultural beliefs. These are also the factors which likely precipitate most CAM use. These reasons can be readily found both in developing and developed countries throughout the world. Table 1. Epilepsy patient and non-patient beliefs about the cause of epilepsy in two cohorts from 3 communities in the rural Department of Olancho, Honduras Responses

Epilepsy patients n=90

Non-patients n=190

Do not know

38

43

Parasites ―bad worm‖ and/or neurocysticercosis

21

13

Heredity

7

19

Cerebral fatigue

4

3

Problems in blood

0

18

Head trauma

4

5

Weakness

2

6

Sorcery, witchcraft, demons, spirits

2

26

Nervousness, anxiety

0

14

Not eating, bad nutrition

2

4

Careless practices*

3

32

Contact with dead bodies

0

4

Drugs, alcohol

0

4

Lack of sexual activity

0

10

Other**

15

59

*like taking a bath immediately after physical activity. **digestive problems, congenital defects, exposure to cold wind, use of forceps during birth, fever, unexpected events/news, lack of menses, problems with husband or family problems, taking a bath during menses, malaria, temperature changes.

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Table 2. Choice of complementary and alternative medicine (CAM) from a national survey of Honduran out-patients with epilepsy related to their community type (urban versus rural) Urban

Rural

Total

No.

%

No.

%

No.

%

Herbs

20

28.6

38

53.5

58

41.1

Potions Amulets Medicine man bath Acupuncture Massage with oils (―sobada‖) Pray to saints Pray to spirits Pray to God Special diet Other

14 1 2 0 1 4 3 42 3 2

20.0 1.4 2.9 0.0 1.4 5.7 4.3 58.6 4.3 2.9

27 1 6 0 4 12 8 38 5 7

38.0 1.4 8.5 0.0 5.6 16.9 11.3 53.5 7.0 9.9

41 2 8 0 5 16 11 80 8 9

29.1 1.4 5.7 0.0 3.5 11.3 7.8 56.7 5.7 6.4

Table 3. Choice of first-aid (multiple responses from an individual were recorded) during an acute epileptic seizure obtained from Miskito tribesmen (n=49) without epilepsy from rural Honduras

Spray water on patient Give Miskito medicine Take patient to clinic Spray aromatic substances Tie or restrain the patient ―Lock‖ the patient Put herbs on eyes (cilantro or garlic) Blowing air Give medicines or pills Give intravenous liquids Watch out for harás Hold the patient Make the patient calm Massage hands with salt Pray Does not know what to do

No. 22 20 11 10 4 3 3 2 2 2 2 1 1 1 1 3

% 45 41 22 20 8 6 6 4 4 4 4 2 2 2 2 6

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Table 4. Adherence history and CAM* use frequency for epilepsy from a national (urban and rural) survey of out-patients with epilepsy throughout all regions of Honduras

Currently taking medicine Had abandoned medicine sometime Gets the medicine all the time Use of CAM* sometime Use of CAM* currently

No. 256 121 223 141 86

% 93.4 44.2 81.4 51.5 31.4

*CAM = complementary and alternative medicine.

There is a diversity of factors influencing CAM use for epilepsy and there is diversity in the specific CAM chosen. Epilepsy patients and normal community members from across the developing country of Honduras, including two tribal groups, were asked what they thought caused epilepsy [Durón et al, 2001, 2009; Varela et al, 2002. Multiple responses from an individual were accepted. Their responses, found in Table 1 and Table 2, indicate their beliefs about epilepsy. These beliefs may explain, in part, the stigma involved and may contribute to the treatment gap and CAM use found in these communities. CAM use is even part of first aid for acute epileptic seizures according to a tribe cohort of 49 non-epilepsy Miskito tribesmen from rural Honduras (Table 3). Additional national survey data taken from Honduran epilepsy out-patients show in Table 4 that CAM use from non-adherence to antiepileptic drugs (AEDs) relates not only to sociocultural aspects but to financial hardship and the treatment gap. Table 5 shows reasons for non-adherence to AED in Honduras [Durón et al, 2009. Whether data was collected in rural or urban centers, the reasons for non-adherence to evidence-based AEDs, as well as the reasons for a high use of CAMs, is multifactorial and not easily solved by financial resources alone. Understanding why patients and their relatives chose CAM use as a substitute for epilepsy treatment will help develop educational strategies to overcome non-adherent issues.

Table 5. Reasons listed from a checklist for non-adherence to their antiepileptic drug(s) from a national (urban and rural) survey of out-patients with epilepsy throughout all regions of Honduras No.

%

Drug not available at hospital

25

20.7

Drug not available at health center

25

20.7

No money to pay for drug

20

16.5

Thought drug didn't work

16

13.2

Forgot to take drug

16

13.2

Did not want to buy drug

15

12.4

Feared reaction to drug

14

11.6

Use of Complementary and Alternative Medicine for Treatment of Epilepsy Table 5. (Continued) No. 10

8.3

No transportation to get drug

9

7.4

No symptoms

8

6.6

Couldn't find a place selling drug

8

6.6

No time to get drug

7

5.8

4

3.4

―Other‖ *

%

Did not want to take drug

*

319

No prescription; drug expired.

CAMS and Evidence Herbal Medicines One of the most common CAMs is herbal medicine. Although many plants have contributed ingredients to modern medications, there is no strong consensus of clinical studies that support their use to control epileptic seizures. A recent Cochrane review analyzed 5 epilepsy herbal treatment trials for epilepsy. Although the methodology was not ideal a few studies showed results which seemed to exhibit some benefit by Far Eastern herbal remedies. Still, current evidence was insufficient to support its use to treat epilepsy [Li et al, 2009. However, some appeared to have anticonvulsant properties in experimental models [Wong, 2010. Animal studies reported from around the world have exhibited in vitro anticonvulsant effects of plants like Capparis deciduas, Solanum nigrum, Croton zambesicus, Nylandtia spinosa L. Dumont, Ficus platyphylla, nutmeg oil of Myristica fragrans, Carissa edulis, Rosa damascene, American skullcap (Scutellaria lateriflora L.), Petiveria alliacea L., Acanthus montanus, Alchornea laxiflora, Hyptis spicigera, Microglossa pyrifolia, Piliostigma reticulatum, Voacanga Africana, and others [Bum et al, 2009. Other reports show anxiolytic and anticonvulsant effects on mice of flavonoids, linalool, and alpha-tocopherol that are present in the extract of leaves of Cissus sicyoides L [de Almeida et al, 2009 . Research has also suggested that the anticonvulsant properties shown by L. alba might be correlated to the presence of a complex of non-volatile substances (phenylpropanoids, flavonoids and/or inositols), and also to the volatile terpenoids (betamyrcene, citral, limonene and carvone), which have been previously validated as anticonvulsants [Neto et al, 2009. Animal models have shown the anticonvulsant properties of Bacopa monnieri extracts and Ficus religios, supporting that 5-HT(2C) receptors are novel targets for developing anti-convulsant drugs [Singh and Goeal, 2009. The Q'eqchi' Maya health system in Central America and Mexico uses a large selection of plants to treat neurological disorders, including epilepsy and anxiety disorders. Canadian researchers have reported a study that evaluated ethanol extracts of 34 plants that were tested in vitro [Awad et al, 2009]. Ten plants showed greater than 50% GABA-T inhibition at 1mg/ml, while 23 showed greater than 50% binding to the GABA(A)-BZD receptor at 250

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microg/ml. Piperaceae, Adiantaceae and Acanthaceae families were highly represented and active in both assays. This suggested a positive correlation between GABA-T inhibition and relative frequency of use for epilepsy [Awad et al, 2009. Similar findings regarding potential antiseizure effects have been reported in a study on the effect of hydro-methanolic percolated extract of Matricaria recutita L. on seizures induced by picrotoxin in male mice [Grundman et al, 2008; Heidari et al, 2009. Several other plants also appear to have anticonvulsant and antianxiety effects due to enhanced GABA effect. [Awad et al, 2009 Resveratrol (Res) is a phytoalexin produced naturally by several plants that has been reported to offer neuroprotection, anti-inflammatory, and anti-cancer effects. A study reported that it showed an anti-epileptic effect against rat kainate-induced temporal lobe epilepsy (TLE). It showed protection of neurons against kainate-induced neuronal cell death in CA1 and CA3a regions and depressed mossy fiber sprouting, which are characteristic both in TLE patients and animal models. Western blot revealed that the expression level of kainate receptors (KARs) in the hippocampus was reduced in Res-administrated rats compared to that in the epileptic group.. These results suggest that plant phytoalexin is a potential anti-epilepsy agent with anti-epileptogenesis properties [Wu et al, 2009. Even though promising results have been shown in pharmacologic and animal studies, difficulties which have been encountered in studies of using herbal medicines for patients with epilepsy include: 1) some herbs are rare or an endangered species, 2) herbs used today may not even correspond to the plants originally described in the old literature, 3) preparations may be from herbs that went through different breeding procedures over several centuries or had different environmental/growing conditions, 4) developing a therapeutic remedy from herbal origins is a complex process that includes standardization of the herbal extract, providing evidence of pharmacological activity, and providing evidence of safety, 5) knowing pharmacokinetic aspects of absorption, knowing the process of the biotransformation of the extract in the body, metabolism, and excretion, 6) the metabolism and pharmacokinetic behavior of active constituents may differ from species to species, and 7) countries define herbal medicines differently and have adopted various approaches to licensing, dispensing, manufacturing, and trading these products. Some plant products have been shown to act on the cytochrome p450 system to alter plasma anti-epileptic drug (AED) levels in epilepsy patients and increase the risk of seizures through direct (pre-convulsant or altered AED metabolic properties) or indirect (contamination with heavy metals or other toxic substances) mechanisms. Table 6 summarizes these and other effects of herbal compounds as reported in the current medical literature [Samuels et al, 2008; Tyai and Delanty, 2009; NLM, 2010a, 2010b. In a recent reported US study of herb and dietary supplement use in patients with epilepsy, approximately one-third of patients used products that had the potential to increase seizures or interact with normal drug metabolism. [Kaiboriboon et al, 2009. The effectiveness and safety of herbal medications for the treatment of epilepsy remains unanswered definitively, especially when used in combination with AEDs. These issues remain in need of much larger, higher quality randomized clinical trials than have been published to date. At this point in time, the known adverse effects and central nervous system drug interactions with herbs should be studied by physicians and allied health personnel and discussed with patients (Table 6). Some specific plants have strong (grade A), good (grade B) or unclear (grade C) scientific evidence of their usefulness. Individual consideration should be carefully evaluated

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when allowing herbs (chamomile, valerian, passiflora) to treat anxiety or insomnia in epilepsy patients, since they could have enhanced sedation effects. In addition, antidepressant drugs are commonly used in epilepsy patients, and their interactions with herbs also need be considered. It is not unusual for patients who use polypharmacy of any type to have unexpected or unexplained adverse side effects, whereas if with the same medications were used alone, the effects would be beneficial. Table 6. A compendium of possible side effects and interactions of commonly used complementary and alternative medicine (CAM) with antiepileptic drugs as well as with other psychopharmacologic medications/compounds Common name Animal or vegetable oils Chamomile

Eucalyptus oil

Scientific name

Common secondary effects

Interactions

None

Interference with intestinal absorption of drugs.

Matricaria recutita, Chamomilla recutita

Sedation can occur.

E. Fructicetorum, Eucalyptus globulus and other species

Gastrointestinal upset, dizziness, muscle weakness, constricted pupils, difficulty breathing, cough, cyanosis, delirium, or convulsions. Less commonly, drowsiness, hyperactivity, difficulty walking, slurred speech, and headache.

Sedation enhanced when combined with AEDs that cause drowsiness (benzodiazepines, barbiturates). May interfere with the cytochrome P450 liver enzyme system, serum levels of AEDs may be increased, with potential increased effects. Increased drowsiness when taken with benzodiazepines, barbiturates, narcotics, some antidepressants, or alcohol. Interference with the cytochrome P450 enzyme system; serum levels of some drugs like barbiturates could be decreased.

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Table 6. A compendium of possible side effects and interactions of commonly used complementary and alternative medicine (CAM) with antiepileptic drugs as well as with other psychopharmacologic medications/compounds (Continued) Common name

Scientific name

Common secondary effects

Interactions

Ephedra

Ephedra sínica, ma huang

Abdominal discomforts, anxiety, dizziness, headache, tremor, insomnia, dry mouth, delirium, fainting, irritability, euphoria, hallucinations, seizures, stroke, hypokalemia, hyperreflexia, weakness, muscle damage, depression, mania, suicidal ideas, Parkinson's disease-like symptoms, kidney stones, hypoglycemia, cardiac arrhythmia, high blood pressure, heart ischemia, myopathy, and cardiac arrest.

Severe cardiovascular and systemic reactions if combined with stimulants, MAOI antidepressants, alkaloids, anesthetic drugs, or antipsychotic drugs. Other antidepressants and medications for psychiatric disorders (phenothiazines, tricyclics, SSRIs) may reduce the effects of ephedra causing low blood pressure and tachycardia. Combination with caffeine may be fatal.

Echinacea

Echinacea angustifolia DC, Echinacea pallida, Echinacea purpurea

Few side effects reported. Complaints include stomach discomfort, sore throat, rash, drowsiness, headache, dizziness, liver dysfunction, thrombotic thrombocytopenic purpura, leukopenia, and muscle aches.

May affect liver metabolism of some drugs including an AED like valproate.

Seizures could occur in individuals with previous seizure disorder, or in individuals receiving antypsychotics or anesthetics. Some report occasional headache, abdominal pain, nausea, and loose stools.

Increased risk of seizures when combined with chlorpromazine, thioridazine, trifluoperazine, fluphenazine, or general anesthesia. Anti-seizure medications may require adjustment because this herb increases risk of seizures. Possible additive effects may occur with anticoagulants, antidepressants, CNS stimulants, and drugs metabolized by the liver.

Few and mild adverse effects like headache, nausea, intestinal complaints, bleeding, and rarely, hypoglycemia, and hypotension. Eating the seeds is potentially deadly, due to risk of tonicclonic seizures and loss of consciousness.

Potential reduction of anti-seizure properties of sodium valproate or carbamazepine. This could be due to altered liver metabolism. Enhanced effects of MAOI drugs, SSRIs, anticoagulants, antiplatelet/aggregation drugs, nonsteroidal anti-inflammatory drugs.

Evening primrose oil

Ginkgo

Ginkgo biloba L.

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Table 6. (Continued) Common name Ginseng

Scientific name

Common secondary effects

Interactions

American ginseng, Asian ginseng, Panax ginseng and other

Seizures have occurred after high consumption of energy drinks containing caffeine, guarana, and herbs, including ginseng. Headache, tremors, mania, or insomnia may occur if combined with MAOIs antidepressants. Potential effect on drug metabolism, by interference with the cytochrome P450 enzyme system, serum levels of certain drugs like AEDs could increase. Ginseng may interact with sedating drugs (like several AEDs).

Kava

Piper methysticum G. Forst

Passiflora, Passion flower

Passiflora incarnata L.

Long-term use may be associated with skin rash, diarrhea, sore throat, loss of appetite, excitability, blood hypertension, hypoglycemia, bleeding, anxiety, depression, or insomnia. Other side effects include headache, dizziness, chest pain, difficult menstruation, breast tenderness, vaginal bleeding after menopause (estrogen-like effects), heartburn, tachycardia, nausea, vomiting, or manic episodes in people with bipolar disorder. Liver toxicity including liver failure. Other serious side effects reported include: skin disorders, blood abnormalities, apathy, kidney damage, seizures, psychotic syndromes, pulmonary hypertension, high blood pressure, meningismus, and kidney toxicity. Mild side effects may include gastrointestinal upset or allergic rash. There are reports of abnormal muscle movements after short-term use, with rigidity, twisting, torticollis, and oculogyric crisis. Tachycardia, nausea, vomiting, drowsiness, sedation, mental slowing. Potential risk of bleeding and alteration of blood tests that measure blood clotting.

Potential increased risk of liver damage if taken with drugs that may affect the liver (such as the AED valproate). AEDs metabolized in kidneys should be used cautiously. There is potential increase in the effects of alcohol and drugs that cause sedation and interference with the cytochrome P450 system, which could increase serum levels of some AEDs.

Some alkaloids with MAOI action present in some species of Passiflora, could enhance MAOI drugs. Increased sedation or low blood pressure could occur when combined with tricyclic antidepressants. There is interaction with sedative drugs (like benzodiazepines and barbiturates), also with drugs metabolized by the liver.

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Reyna M. Durón and Kenton R. Holden Table 6. (Continued)

St. John's wort

Hypericum perforatum L.

Infrequent gastrointestinal upset, skin reactions, fatigue, sedation, anxiety, sexual dysfunction, photosensitivity, dizziness, headache, blood hypertension, and dry mouth. Some have reported psychiatric symptoms such as suicidal and homicidal thoughts.

Interference with the cytochrome P450 enzyme system, potential increase in serum levels of drugs like carbamazepine, cyclosporin, midazolam, nifedipine, simvastatin, theophylline, warfarin, or HIV drugs. Combination with antidepressants may lead to increased side effects, including serotonin syndrome and mania.

Valerian

Valeriana officinalis L. and other

Headache, excitability, stomach upset, uneasiness, dizziness, ataxia, hypothermia. Chronic use may cause insomnia. Slight transient reductions in concentration or complicated thinking may occur.

Drowsiness may be worsened when taken with sedating medications (benzodiazepines, barbiturates, and other), as a result of GABA enhancement. Potential liver toxicity could affect several drugs metabolism.

Key: SSRI = selective serotonin reuptake inhibitor; MAOI = monoamine oxidase inhibitor; AED = antiepileptic drug; CNS = central nervous system; GABA = gamma-aminobutyric acid; HIV = human immunodeficiency virus. Samuels et al, 2008; Tyagi and Delanty , 2003; NLM 2010a, 2010b.

Acupuncture Acupuncture is an ancient practice introduced by the Chinese culture. New or modified modalities include electroacupuncture, laser acupuncture, acupressure, and catgut implantation to acupoints. It has become an inexpensive and generally safe procedure. According to a recent review of complementary and alternative medicine use in the US population, an estimated 2.1 million people or 1.1% of the population sought acupuncture care during the past 12 months. Four percent of the US population have used acupuncture at some time in their lives [Barnes et al, 2004 Acupuncture is based on beliefs regarding the regulation of five main elements (fire, earth, metal, water, and wood), as well as yin and yang, Qi, and blood and body fluids. It is thought that stimuli to some meridian points can bring internal homeostasis to the body systems. Some studies in animals and humans have shown that responses can occur both close to the site of application and at a distance, mediated mainly by sensory neurons to many structures within the central nervous system. There are several theories about the suspected inhibitory effect of acupuncture in seizures related to increasing the release of inhibitory neurotransmitters. Although animal studies using acupuncture reveal antiepileptic effects, suggesting that suppression of epileptic discharges is secondary to altering neurotransmission, a recent Cochrane review of 11 published studies concludes that acupuncture has not been proven to be safe or effective in treating people with epilepsy [Ceuk et al, 2009. To date, the evidence in favor of acupuncture is more anecdotal than scientific. Randomized doubleblinded studies are needed. With such widespread use of acupuncture at the present time, it

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should be a priority to adequately study whether or not there is a rational acupuncture protocol for specific ages and specific epilepsy types [Jindal et al, 1997.

Psychological-Behavioral Biofeedback, prayer, yoga, music, and other similar therapies could be considered behavioral treatments for epilepsy. They are low-cost, noninvasive, ambulatory interventions that can be used simultaneously with standard treatments of epilepsy [Ramaratnam et al, 2001. These techniques can enhance body and mind health, while at the same time possibly help decrease brain electrical activity which correlates with seizures. They can also be used in different cultural contexts. Biofeedback relaxation or imagery techniques have been found to be useful for anxiety, stress, headache pain, and hypertension which are common comorbidities in epilepsy patients. However, in recent Cochrane reviews of relaxation therapy, cognitive behavioral therapy, electroencephalographic or galvanic skin response biofeedback, as well as yoga as a treatment for control of epilepsy, used alone or in combination, no impact on seizure control was demonstrated. Although these interventions may reduce anxiety, improve social behavior, and improve compliance, further large welldesigned high quality randomized clinical trails are needed to give these therapies reliable evidence to support them for the treatment of epilepsy [Yardi, 2001; Lundgren et al, 2008.

Vitamins and Other Dietary Supplements Vitamins and minerals can help prevent some secondary effects of AEDs, eg, anemia, osteoporosis, and teratogenesis, and are necessary for good health. However, large doses of vitamins do not improve the symptoms of epilepsy and may even be harmful if given in megadoses. A balanced diet should supply most of the vitamins and minerals a person needs each day. People with epilepsy taking AEDs appear to have an increased need for folic acid, calcium, and vitamin D. Women who may become pregnant and pregnant women with and without epilepsy need sufficient folic acid to help prevent birth defects, especially those related to the brain and spinal cord. The conclusion of a recent meta-analysis [AAN, 2009 was that the risk of spinal cord/brain anomalies in the offspring of women with epilepsy is possibly decreased by folic acid supplementation (two adequately sensitive Class III studies). Therefore, it is recommended that preconceptional folic acid supplementation or fortification in women with epilepsy be considered so as to reduce the risk of brain/spinal cord birth defects, especially meningomyelocele. Although the data are insufficient to show that it is effective in women with epilepsy, there is no evidence of the harm and no reason to suspect that it would not be effective in this group. There is no reason to modify the current folic acid supplementation or fortification recommendation that all women of childbearing potential, with or without epilepsy, receive supplementation or fortification with at least 0.4 mg of folic acid daily prior to conception and during pregnancy. Melatonin, a natural hormone secreted by the brain‘s pineal gland, has been thought to reduce the incidence of epilepsy in children. Although there is no large meta-analysis to

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support the use of melatonin at this time for epilepsy therapy, further randomized control studies need to be done with this compound. Melatonin is of special interest since it plays a role in our normal sleep-awake cycle. Many epilepsy patients have additional seizures when they are sleep-deprived. Melatonin may offer in the future a unique opportunity for its use in a subgroup of epilepsy patients if evidence is forthcoming from future treatment trials to support its use.

Alternative Diets Ketogenic and Atkins diets, as well as modifications of these diets, are useful evidencebased CAM therapies for use in refractory epilepsies of children and adults. The Ketogenic diet was initially used in 1921 as a way to cause diet-induced ketosis to mimic fasting, something known since biblical days as a treatment for epilepsy. Approximately 90% of the calories in the Ketogenic diet are derived from fat intake. Although the diet became less popular with the introduction of effective pharmacotherapy, it still remains an effective evidence-based therapy for seizures refractory to AEDs. The Ketogenic diet reduces seizure frequency by > 50% in 54% of children with intractable epilepsy [Vining et al, 2008; Freeman et al, 2009. Although the diet is most effective in infants and young children, success can be found in all age groups. The anti-convulsant mechanism of action is still not known. However, a recent report on mice of the prevention by the Ketogenic diet of myopathic ultrastructural abnormalities from mitochondrial dysfunction appears to be important news in the quest to find an answer to the exact mechanism of action [AholaErkkilä et al, 2010. The modified Atkins diet [Kossoff et al, 2008 is high in fat and low in carbohydrates (low-carb) and has even been found to be useful for developing countries. This modified diet resembles Dr. Atkins‘ low-carb diet designed for both weight loss and healthy living. The "Modified Atkins‖ diet for seizures can be viewed as a "lighter dose" of the Ketogenic diet. More highly studied in children, this less restrictive diet when compared to the Ketogenic diet reduces childhood seizure frequency by > 50% in 47% of children with intractable epilepsy. Adult studies are currently underway and preliminary reports are positive for its effectiveness for seizure control in this population too. Additional studies are also currently underway for other modified diets e.g., low-glycemic index, etc. to find a more tolerable diet that may be more or at least as effective as the Ketogenic diet.

Miscellaneous Therapies (“Other”) There are other CAMs reported by patients which will not be discussed in detail in this chapter. Although they commonly appear on ―news‖ wires and on various ―web-sites‖, therapies such as magnetotherapy, chiropractic, aromatherapy, homeopathy, desensitization and other condition strategies, focal cooling, etc. have had no rigorous scientific studies which conclude that any of them are beneficial in the control of epilepsy.

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CAM Useage Outcomes Health personnel and patients and/or their relatives need to remember the following about CAM usage outcomes. There are five possible results in the patient from using CAMs to treat epilepsy. First, their effect is neutral or not harmful and/or they do not interact with an AED or other modern epilepsy treatments. Second, their effect is harmful or detrimental to the patient because of primary/secondary effects or undesired interactions. Third, they are not effective as an AED, but they do promote general health. Fourth, their effect is unknown, and, therefore, most likely risky. Fifth, they are effective as an AED.

Conclusion Because of the wide range of CAM effects, patients and medical providers need to discuss openly the use of CAMs in the acute and chronic treatment of epilepsy. Widespread non-adherence to evidence-based epilepsy treatments can be attributed to inadequate education, AED unavailability, insufficient resources, cultural beliefs, and wide use of CAMs. A comprehensive epilepsy education program, along with improved access to evidence-based AEDs, appears to be the initial step to change non-adherent behaviors and to close the epilepsy treatment gap of non-adherence to prescribed evidence-based anti-convulsant medications and other therapies [Meinardi et al, 2001. At the same time, clinical translational research needs to be promoted to determine newer specific and alternative therapies for epilepsy, some of which may prove to be CAMs currently in use at the present time.

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Lundgren T, Dahl J, Yardi N, Melin L (2008) Acceptance and commitment therapy and yoga for drug-refractory epilepsy: a randomized controlled trial. Epilepsy and Behavior, 13:102–8. Medina MT, Durón RM, Martínez L, Osorio JR, Estrada AL, Zúniga C, Cartagena D, Collins JS, Holden KR (2005) Prevalence, incidence, and etiology of epilepsies in rural Honduras: the Salamá study. Epilepsia 46:124-131. Meinardi H, Scott RA, Reiss, JWAS Sander (2001) ILAE Commission report. The treatment gap in epilepsy: the current situation and ways forward. Epilepsia, 42(1):136-149. Neto AC, Netto JC, Pereira PS, Pereira AM, Taleb-Contini SH, França SC, et al (2009) The role of polar phytocomplexes on anticonvulsant effects of leaf extracts of Lippia alba (Mill.) N.E. Brown chemotypes. J. Pharm. Pharmacol, 61(7):933-9. National Library of Medicine (NLM). MedlinePlus. Drugs and supplements. All drugs and supplements.Accessed 03/10/2010a. Available from: http://www.nlm.nih.gov/ medlineplus/druginfo/herb National Library of Medicine (NLM). Dietary Supplements Labels Database. Accessed 03/10/2010b. Available from: http://dietarysupplements.nlm.nih.gov/dietary/herbIngred. jsp. Osuntokun B (1977) Epilepsy in the African Continent. In: Penry JK Ed. Epilepsy, The Eighth International Symposium, New York: Raven Press;:365-378. Pal SK, Sharma K, Prabhakar S, Pathak A.(2008) Psychosocial, demographic, and treatmentseeking strategic behavior, including faith healing practices, among patients with epilepsy in northwest India. Epilepsy Behav, 13(2):323-32. Ramaratnam S, Baker GA, Goldstein LH. Psychological treatments for epilepsy. Cochrane Database Syst. Rev. 2001;4:CD002029. Samuels N, Finkelstein Y, Singer SR, Oberbaum M.(2008) Herbal medicine and epilepsy: proconvulsive effects and interactions with antiepileptic drugs. Epilepsia, 49(3):373-80. Singh D, Goel RK(2009) Anticonvulsant effect of Ficus religiosa: role of serotonergic pathways. J. Ethnopharmacol, 123(2):330-4. Tyagi A, Delanty N (2003) Herbal remedies, dietary supplements, and seizures. Epilepsia 44(2):228-35. Varela F, Nicolás O, Durón R, Medina MT (2002) Aspectos antropológicos y culturales que inciden en la determinación de la prevalencia de las epilepsias en la etnia miskita de Honduras. Rev. Med. Hond, 70:9-14. Vining EP(2008) Long-term health consequences of epilepsy diet treatments. Epilepsia 49(Suppl 8):27-9. Wong M (2010) Herbs and spices: Unexpected sources of antiepileptogenic drug treatments? Epilepsy Currents, 10:21-23.Wu Z, Xu Q, Zhang L, Kong D, Ma R, Wang L (2009) Protective effect of resveratrol against kainate-induced temporal lobe epilepsy in rats. Neurochem. Res,34 (8):1393-400. Yardi N (2001) Yoga for control of epilepsy. Seizure,10: 7–12

Index A absorption, 303, 320, 321 abuse, xvi, 196, 234, 251, 252, 259, 297 academic performance, 111 accessibility, 131, 167, 169, 276 accommodation, 100, 102, 103, 105 accuracy, 85, 179, 184, 210 acetylcholinesterase, 310 acetylcholinesterase inhibitor, 310 acid, 67, 130, 136, 139, 258, 324, 325, 327 acquaintance, 24 activism, 146 acupuncture, x, 83, 324, 328 ADA Amendments Act, 110 adaptation, xiv, 34, 46, 47, 98, 112, 204, 217, 228, 232, 240, 241, 242, 246, 253 adaptations, 38 adaptive functioning, 235 ADHD, 215, 222, 226 adjustment, 18, 19, 43, 44, 47, 48, 49, 55, 56, 102, 108, 118, 133, 209, 211, 215, 217, 221, 228, 230, 231, 232, 235, 236, 237, 238, 242, 244, 245, 246, 256, 322 administrators, 65, 148 adolescent boys, 124 adolescent development, 201 adolescents, xiii, 35, 112, 124, 134, 177, 183, 184, 186, 187, 191, 193, 196, 197, 199, 202, 203, 205, 216, 217, 221, 222, 223, 224, 225, 227, 232, 237, 241, 242, 243, 244, 245 adult literacy, 87 adulthood, 45, 46, 49, 57, 128, 191, 234, 251, 284 advantages, 146, 155, 290, 306 adverse event, 57, 262, 305 advocacy, 37, 104, 106 aetiology, 47, 112, 241, 290, 293, 301

affective disorder, 47, 127, 223, 278 affective meaning, 23 affirmative action, 103 Africa, 32, 39, 57, 66, 67, 71, 88, 95, 97, 105, 112, 114, 158, 258, 261, 280, 287, 314, 328 African Americans, 31, 77, 266 agencies, 103, 106, 146 aggregation, 322 aggression, 211, 212, 230 AIDS, 24, 25, 26, 27, 66, 67, 68, 69, 90, 144, 160, 205, 280 albumin, 303 alcohol use, 190, 268 alcoholism, 292 algorithm, 298 alienation, 65 alkaloids, 322, 323 allergic reaction, 315 alpha-tocopherol, 319, 327 alternative medicine, x, 30, 161, 172, 174, 313, 314, 317, 318, 321, 322, 324, 327, 328 alternative treatments, 315 ambivalence, 274 amenorrhea, 119 American Psychiatric Association, 156, 253, 254, 259, 277 Americans with Disabilities Act, 100, 102, 103, 104, 107, 109, 110, 113 amnesia, 292, 294, 295, 310 amulet, 171 anemia, 315, 325 anesthetics, 322 anger, 6, 12, 81 angina, 262 anthropologists, 34 anthropology, xvii, 29, 30, 40, 173 antibiotic, 160

332 anti-cancer, 70, 320 anticholinergic, 294 anticonvulsant, 129, 136, 137, 138, 139, 201, 204, 227, 240, 242, 284, 292, 313, 319, 320, 327, 328, 329 anticonvulsant treatment, 227 antidepressant, 247, 250, 266, 271, 282, 304, 321 antidepressant medication, 247, 271 anti-inflammatory drugs, 322 antimicrobial therapy, 205 antipsychotic, 304, 307, 322 antipsychotic drugs, 304, 322 antiretrovirals, 67 antisocial behavior, 191, 211, 218, 243 anxiety, 6, 10, 11, 12, 14, 16, 45, 47, 48, 50, 55, 98, 120, 121, 122, 124, 126, 127, 129, 132, 136, 137, 138, 151, 154, 158, 176, 183, 187, 190, 205, 211, 212, 215, 216, 217, 221, 226, 229, 230, 231, 233, 234, 235, 236, 237, 240, 241, 242, 243, 246, 251, 253, 254, 262, 264, 279, 281, 282, 283, 285, 302, 316, 319, 321, 322, 323, 324, 325 anxiety disorder, 127, 138, 242, 319 aortic stenosis, 294 apathy, 323 appetite, 253, 259, 268, 323 appointments, 192, 193, 199, 203, 265 aptitude, 77 Arab countries, 133 Arab world, 172 arousal, 119, 120, 132 arrest, 322 arrhythmia, 322 artery, 295 arthritis, 262 articulation, 246 Asia, 25, 70, 95, 96, 97, 112, 286, 313, 314 Asian countries, 267 Asian values, 32 assassination, 39 assessment, ix, x, xiii, 5, 16, 30, 35, 39, 40, 44, 56, 57, 71, 76, 77, 87, 88, 94, 95, 106, 109, 110, 145, 174, 180, 181, 182, 183, 184, 185, 196, 198, 200, 204, 207, 208, 211, 220, 222, 223, 228, 244, 251, 255, 258, 269, 270, 271, 274, 282, 294, 302, 305, 307 assessment techniques, 181 assessment tools, 35, 76, 251 assets, 63 asterixis, 294 asthenia, 291, 297

Index asthma, 123, 133, 135, 180, 188, 202, 203, 217, 229, 230, 231, 236, 237, 242, 243, 262, 280 asylum, 148, 149, 156 ataxia, 315, 324 atonic, 6 atrophy, 311 attachment, 262 attitude measurement, 100 attribution, 143, 144 auscultation, 295 authorities, 151, 165, 171 autism, 24, 26, 136, 139, 140 automatisms, 295, 297 autonomy, 53, 186, 191, 237, 238, 302 autopsy, 178, 290, 300 avoidance, viii, 1, 84, 219, 238, 252, 268, 303

B barbiturates, 321, 323, 324 barriers, vii, ix, x, xiii, 32, 33, 61, 93, 94, 95, 97, 103, 104, 106, 107, 124, 153, 183, 184, 189, 191, 192, 193, 194, 196, 197, 198, 219, 257, 258, 265, 267, 268, 274, 276, 277, 282 basic services, 61 Beck Depression Inventory, 268 behavior therapy, 205, 282 behavioral aspects, 202 behavioral assessment, 196 behavioral change, 252 behavioral dimension, 211 behavioral disorders, 298 behavioral problems, ix, 207, 208, 211, 212, 213, 214, 215, 216, 217, 218, 219, 305 behaviors, 34, 76, 85, 105, 108, 181, 183, 184, 190, 191, 196, 197, 198, 199, 201, 202, 203, 209, 210, 211, 215, 217, 219, 242, 252, 254, 262, 268, 271, 273, 274, 277, 314, 327 belief systems, 23, 32, 33, 165, 168, 169 benign, 243, 294, 299 benzodiazepine, 118 bias, 22, 190, 291 bile, 147 binding globulin, 121 bioassay, 180 biofeedback, 325 biological consequences, 276 bioterrorism, 83 bipolar disorder, 250, 253, 287, 323 births, 120

Index bleeding, 128, 322, 323 blood clot, 323 blood plasma, 182 blood pressure, 295, 322, 323 blood transfusion, 83 body fat, 124 body fluid, 324 body image, 124 body weight, 182 bone, 130, 204, 304, 315 bone marrow, 204, 315 bone marrow transplant, 204 bone mass, 130 brain, x, xiv, 2, 24, 37, 74, 86, 89, 110, 118, 134, 136, 137, 138, 141, 145, 147, 153, 154, 156, 157, 168, 213, 227, 233, 241, 243, 250, 259, 261, 262, 290, 291, 292, 299, 300, 302, 325 brain abnormalities, 213 brain activity, 243 brain damage, 227, 233 brain structure, 259 Brazil, 3, 79, 84, 87, 89 breakdown, 33 breast cancer, 84, 90, 91 breastfeeding, 130, 327 breathing, 104, 295, 321 breeding, 320 Britain, 96, 112, 150, 153 brothers, 38, 234 bruit, 295 bubonic plague, 148 Buddhism, 285 budget allocation, 62 building blocks, 209 bullying, 223

C caesarean section, 128 caffeine, 322, 323 calcium, 304, 325 calcium channel blocker, 304 Cambodia, 62, 70 campaigns, 31, 83 cancer, vii, 24, 26, 70, 84, 88, 90, 91, 174, 205, 260, 262, 303, 320 cancer screening, 84, 91 candidates, 74, 226 carbohydrates, 326 cardiac arrest, 322

333

cardiac arrhythmia, 322 cardiovascular disease, 89, 261, 297 cardiovascular function, 294 cardiovascular system, 301 care model, 65, 198, 270, 277 caregivers, ix, 35, 58, 73, 74, 84, 85, 86, 91, 176, 177, 183, 184, 189, 191, 192, 193, 196 carotid sinus, 294, 295 case study, 33, 64 catatonia, 250 caucasians, 77 causal relationship, 280 causality, 210 causation, 147, 151, 157 cell death, 129, 137, 320 cell phones, 37 central nervous system, 188, 208, 212, 224, 231, 320, 324 cerebral cortex, 156 cerebral palsy, 99, 173, 209, 242 cerebrovascular disease, 118, 290, 291 cervical cancer, 88 channel blocker, 304 character traits, 251 child abuse, 234 child bearing, 129 Child Behavior Checklist, 211, 220, 241 childhood, ix, xvi, 31, 65, 79, 123, 133, 182, 199, 200, 201, 202, 203, 204, 207, 208, 210, 215, 217, 218, 220, 221, 222, 223, 224, 225, 226, 227, 228, 230, 231, 242, 246, 262, 326 childhood disorders, 225 Chile, 258, 287 China, vii, 30, 32, 39, 40, 41, 63, 80, 89, 114 Chinese medicine, 30, 169, 328 cholinesterase, 301 cholinesterase inhibitors, 301 Christians, 147 chromatography, 182, 203 chromosome, 301, 307 chronic diseases, xi, xii, 114, 194, 221, 230, 233, 237, 260, 261, 262, 266, 276, 284 chronic illness, xii, xiii, xiv, 23, 24, 26, 27, 31, 32, 38, 44, 54, 109, 112, 176, 180, 193, 204, 207, 213, 217, 218, 227, 228, 229, 230, 232, 236, 238, 239, 246, 260, 269, 278, 289, 314 churches, 285 circadian rhythm, 295 citizenship, xvi, 67, 68, 70 city, 39, 96, 112, 173

334 civil rights, 94, 103, 104 clarity, 249 class, 90, 139, 149, 150, 173, 271 clients, 66, 106 clinical diagnosis, 295, 300 clinical neurophysiology, xii, xv, 145 clinical presentation, 291, 292, 293, 294, 306 clinical psychology, xi, 157, 287 clinical symptoms, 294, 295 clinical trials, xv, 56, 178, 193, 306, 320 closure, 106 clusters, 47 CNS, 118, 136, 208, 209, 210, 213, 214, 229, 322, 324 coercion, 152 cognition, 44, 188, 213, 221, 222, 223, 224, 263 cognitive abilities, 88, 128, 209, 302 cognitive deficit, 215 cognitive deficits, 215 cognitive development, 123 cognitive dysfunction, 79, 247, 294 cognitive function, 79, 128, 189, 213, 214, 215, 221, 256, 263, 284, 298, 300 cognitive impairment, 13, 154, 214, 218, 236, 263, 294, 297, 301, 303, 308, 309 cognitive slowing, 79 cognitive therapy, 283, 284, 286, 287 college students, 114 collusion, 146, 154, 157 colonisation, 156 coma, 292 combination therapy, 74 common symptoms, 10 communalism, 32 communication skills, 76, 216, 239 communication strategies, 269 community, vii, viii, ix, xii, xvi, xvii, 26, 31, 32, 34, 45, 48, 51, 53, 55, 57, 64, 65, 69, 83, 84, 88, 95, 96, 97, 98, 105, 108, 110, 111, 112, 125, 126, 135, 138, 141, 148, 150, 163, 164, 165, 166, 167, 168, 169, 170, 171, 189, 229, 254, 256, 263, 264, 267, 276, 280, 281, 283, 284, 286, 314, 317, 318 community support, 33, 65 comorbidity, x, 135, 154, 266, 278, 280, 282, 286 comparative costs, 286 compensation, 104 competition, 146 complaints, 105, 227, 230, 231, 232, 235, 237, 238, 241, 259, 260, 295, 322

Index complex partial seizure, 6, 7, 8, 13, 47, 95, 117, 139, 221, 225, 232, 243, 245, 291, 300 complexity, ix, x, 73, 75, 228 compliance, 64, 85, 109, 112, 168, 176, 191, 197, 199, 200, 201, 203, 204, 208, 228, 240, 242, 245, 251, 252, 303, 304, 325 complications, 53, 66, 95, 128, 132, 135, 315 composition, 187 compounds, 260, 320, 321, 322 comprehension, 75, 86 computer chips, 181 conceptual model, 245, 251, 262 conceptualization, 34, 103, 259 concordance, 168, 169, 177, 233 conduct disorder, 230 conduction, 294 conference, xiii, 277, 307 confidentiality, 167 configuration, 239 configurations, 239 confinement, 152 conflict, 176, 191, 198, 238, 260 conflict resolution, 238 congenital malformations, 128, 139 connectivity, 53, 139 consciousness, 51, 151, 292, 293, 294, 295, 297, 298, 322 consensus, 138, 307, 309, 319 construct validity, 184 consulting, xiv, 287 consumer choice, 173 consumption, 3, 251, 323 contamination, 320 contingency, 197 contraceptives, 127, 139 control group, 45, 78, 85, 118, 120, 121, 196, 229, 234, 239, 275, 276 controlled studies, 118 cooking, 7, 12 cooling, 326 coordination, 90 COPD, 204 coping strategies, 114, 124, 241, 253, 265, 268 coronary heart disease, 255, 278, 285 correlation, 52, 76, 90, 214, 229, 250, 320 correlations, xv cortex, 139, 156, 311 cosmopolitanism, xvi cost, 24, 30, 39, 57, 59, 60, 62, 63, 65, 67, 68, 69, 79, 97, 102, 113, 148, 163, 167, 169, 170, 182, 183,

Index 185, 199, 201, 205, 265, 274, 277, 286, 295, 307, 325 Costa Rica, 105 cough, 321 coughing, 295 counseling, 32, 85, 106, 138, 193, 268, 274, 279, 303 counter measures, 4, 14 covering, 103 craving, 251 creativity, 38 Creutzfeldt-Jakob disease, 302, 306, 308, 309, 310 criminal tendencies, 158 criticism, 76, 144, 149, 157, 191, 228, 235, 240 critics, 162 Croatia, 11, 154 cross-cultural comparison, 15 CT scan, 302 cues, 210 cultural barriers, 32 cultural beliefs, 4, 30, 314, 316, 327 cultural differences, 54, 76, 200, 267 cultural studies, 33 cultural values, 169 culture, 3, 33, 34, 35, 43, 49, 84, 173, 209, 234, 324 cyanosis, 321 cycles, 117, 119, 120, 131, 273 cyst, 120 cystic fibrosis, 180, 203, 205, 231 cytochrome, 313, 320, 321, 323, 324 cytochrome p450, 313, 320 Czech Republic, 81, 89

D daily living, 51, 235, 300 danger, 11, 23, 151, 157 data collection, 10, 185, 267 data gathering, 9 data set, 19 database, 5 death rate, 158 deaths, 118 deconstruction, 159 deep brain stimulation, 74 defecation, 295 defects, 316, 325 defence, 143, 152, 156, 166 deficit, 211, 215, 223, 224, 293, 297, 298 deinstitutionalization, 267 delinquent behavior, 238

335

delirium, 293, 294, 321, 322 delusions, 294 dementia, x, xv, 148, 157, 289, 290, 291, 293, 294, 298, 300, 301, 302, 306, 307, 308, 309, 310, 311 demographic characteristics, 1, 5, 8 demographic data, 81 dengue, 62, 66, 70 dengue fever, 62 denial, 20, 124, 190, 238, 265 Denmark, 3, 26 Department of Health and Human Services, 33, 41, 76, 89, 90 dependent variable, 22 depressants, 272 depressive symptoms, 58, 231, 242, 251, 253, 254, 256, 260, 262, 264, 265, 268, 269, 270, 271, 272, 275, 276, 278, 281, 283, 284, 285 deprivation, 1, 3, 7, 10, 12, 13, 31, 39, 80 desensitization, 326 destruction, 159, 251 detection, 76, 101, 141, 205, 266, 277, 281 developed countries, x, 30, 66, 67, 97, 116, 314, 315, 316 developed nations, 69 developing brain, 134, 136, 138 developing countries, xv, 30, 59, 60, 61, 63, 64, 65, 66, 67, 68, 69, 70, 71, 96, 97, 116, 258, 261, 286, 315, 326, 328 developing nations, 106, 314 devolution, 249 diabetes, xii, 23, 24, 58, 66, 86, 90, 180, 188, 198, 199, 201, 202, 205, 217, 229, 230, 231, 244, 245, 246, 261, 262, 266, 280, 294 diagnosis, vii, x, xviii, 13, 20, 21, 34, 35, 38, 44, 47, 49, 50, 76, 109, 129, 137, 144, 154, 156, 170, 190, 193, 197, 211, 213, 215, 224, 242, 247, 253, 254, 257, 258, 265, 266, 268, 269, 270, 277, 281, 286, 289, 290, 291, 292, 294, 295, 296, 297, 298, 299, 300, 302, 303, 306, 307, 308, 309 Diagnostic and Statistical Manual of Mental Disorders, 156, 253, 254 diagnostic criteria, 266, 309 diarrhea, 323 diet, x, 4, 7, 12, 74, 88, 147, 315, 317, 325, 326, 327, 328, 329 dieting, 1 differential diagnosis, 47 diffusion, 295 diplopia, 315 direct cost, 178

336 direct costs, 178 direct observation, x, 228, 235, 236 disability, xiv, 31, 40, 60, 93, 94, 98, 100, 101, 102, 103, 104, 105, 106, 107, 109, 112, 113, 114, 143, 146, 154, 167, 172, 173, 204, 219, 225, 226, 248, 258, 260, 261, 279, 280, 285, 286 disadvantages, 146 discharges, 119, 135, 292, 299, 302, 324 disclosure, 83, 100, 101, 106, 108, 113 discomfort, 259, 269, 322 discrimination, viii, 18, 19, 23, 25, 26, 48, 50, 64, 83, 94, 99, 100, 103, 104, 105, 111, 144, 157, 172, 217, 247, 253 disease activity, 239 disease model, 250 disorder, 2, 20, 21, 24, 29, 37, 43, 44, 45, 46, 47, 48, 49, 52, 54, 55, 80, 81, 82, 111, 120, 127, 138, 139, 143, 144, 145, 147, 148, 151, 153, 154, 156, 157, 166, 202, 213, 214, 215, 223, 224, 225, 230, 234, 238, 243, 244, 248, 249, 250, 251, 252, 253, 254, 256,묈257, 258, 261, 262, 263, 266, 281, 282, 286, 287, 295, 297, 322, 323 dissatisfaction, x, 167, 193, 314, 316 dissociation, 90 distress, ix, 22, 35, 48, 52, 53, 121, 135, 143, 144, 187, 233, 235, 259, 262, 266 disturbances, xv, 119, 139, 268, 289, 292, 294, 306, 309, 315 divergence, 153 diversity, 318 dizziness, 291, 295, 300, 315, 321, 322, 323, 324 doctors, 36, 65, 108, 146, 149, 155, 158, 161, 166, 172, 277, 315 dominance, 146, 148, 156, 170 donations, 61, 67 donors, 64 dopamine, 258 dosage, 52, 178, 198, 202, 303 dosing, 85, 91, 176, 179, 180, 181, 182, 188, 193, 195, 196, 197, 198, 205 drainage, 150 drawing, 239 drug interaction, 128, 303, 304, 305, 307, 308, 320 drug metabolism, 320, 323 drug reactions, 177 drug resistance, 177 drug therapy, 115, 176, 201, 204 drug treatment, 307, 329 drugs, ix, 4, 7, 12, 55, 60, 66, 67, 68, 70, 74, 88, 121, 128, 133, 134, 135, 136, 138, 139, 157, 165, 168,

Index 170, 172, 175, 199, 201, 202, 203, 204, 232, 234, 240, 252, 260, 266, 271, 286, 290, 292, 293, 294, 297, 302, 303, 304, 305, 307, 308, 309, 311, 318, 319, 321, 322, 323, 324, 329 dumping, 180, 181 dysthymia, 48, 275 dysthymic disorder, 254

E earnings, 261 Eastern Europe, 96 economic development, 67 economic growth, 64 economic status, 21, 234 economic well-being, 44 economy, vii, ix, 30, 59, 61, 63, 71, 197 editors, iv, 40, 113, 159, 160, 161, 308 educational attainment, 77, 81, 126, 261 educational materials, 65, 86 Egypt, 199 elaboration, 171 elderly population, 44, 191, 196, 298, 299, 305 elders, 169 electrocardiogram, 295 Electroconvulsive Therapy, 159 electroencephalogram, 156 electrolyte, 294 emotion, 10, 188, 203, 209, 215, 228, 235, 236, 244, 245 emotion regulation, 215 emotional disorder, 230 emotional distress, 235 emotional reactions, 38 emotional well-being, 44, 275 emotionality, 211, 222 employability, 109, 279 employee compensation, 104 employment, vii, ix, 5, 18, 19, 21, 22, 25, 44, 45, 48, 50, 51, 54, 61, 87, 93, 94, 95, 96, 97, 98, 99, 100, 101, 102, 103, 104, 105, 106, 107, 108, 109, 110, 111, 112, 113, 116, 122, 124, 125, 130, 132, 134, 136, 139, 149, 157, 263, 278, 279, 286 Employment Equity Act, 105 employment status, 5, 22, 25, 51, 61, 94, 96, 97, 98, 99, 108, 111, 112, 122, 125, 132 empowerment, 114 encephalitis, 299 encephalopathy, 294, 302, 306 encouragement, 195

Index endangered species, 320 endocrine, 117, 120, 121, 122, 135, 136, 138, 315 endocrine disorders, 117, 120, 122, 135 end-stage renal disease, 285 endurance, 36 enforcement, 71 England, xi, xvii, 21, 35, 37, 79, 88, 96, 150, 156, 160, 161, 163, 164, 168, 170, 173, 225 environmental factors, 208, 210, 216, 220, 258, 291 enzyme induction, 304 epidemic, 67, 69 epidemiologic studies, 258, 285 epidemiology, xvi, xvii, 55, 110, 114, 133, 135, 281, 285, 286, 287, 306, 308, 309, 311 epileptogenesis, 320 epistemology, 163, 169, 170 equality, 61, 104, 106, 107 equipment, 65, 102, 182 equity, 53, 60, 62, 72, 103 Estonia, 88, 98 estrogen, 117, 323 ethanol, 319 ethics, 5 ethnic background, 5, 301 ethnic groups, xvii, 77, 315 ethnic minority, 31 ethnicity, xiv, 2, 31, 33, 39, 77, 174 etiology, 55, 56, 112, 137, 213, 220, 256, 258, 281, 287, 302, 329 eugenics, 158, 160 euphoria, 322 European Union, 105 evil, 166 examinations, 102 excitability, 323, 324 excitation, 300 exclusion, vii, xvi, 26, 34, 38, 103, 150 excretion, 320 executive function, 79 executive functioning, 79 exercise, 165, 256 expenditures, 177, 178 experiences, vii, ix, xii, 1, 2, 3, 4, 5, 6, 9, 13, 14, 18, 29, 30, 31, 34, 35, 36, 40, 82, 91, 99, 143, 144, 164, 170, 172, 173, 174, 199, 217, 226, 271 exploration, 10, 12, 31, 249, 283 exposure, xiv, 10, 14, 26, 79, 128, 134, 136, 138, 139, 140, 316 external locus of control, 248 externalizing behavior, 198, 211

337

extraversion, 251 eye movement, 295, 299

F facilitators, x, 102, 189, 191, 192, 219, 257, 258, 268 fainting, 298, 322 fairness, 53, 61 faith, 65, 164, 166, 169, 171, 174, 329 false belief, 83 false negative, 20, 21 family conflict, 176 family environment, 123, 216, 220, 229 family factors, x, xiii, 189, 198, 203, 215, 227, 228, 230, 234, 237, 239, 241 family functioning, 193, 215, 218, 240 family history, 187, 248, 258 family interactions, 228, 235, 241 family life, 35, 97, 228, 232, 233, 241 family members, 1, 8, 9, 11, 30, 84, 164, 176, 229, 233, 236, 239, 315 family planning, 65 family relationships, 237, 240 family support, 305 family therapy, 245, 246 farmers, 63 farmland, 63 fasting, 1, 7, 12, 326 fat, 124, 326 FDA, 286 fears, 148, 216, 240 feedback, 198, 269 feelings, 49, 50, 217, 259, 263, 264, 271, 272, 273, 274 fertility, 119, 120, 121, 122, 132, 134, 140 fertility rate, 119, 120, 121, 132, 140 fever, 3, 62, 316 fiber, 320 fibrosis, 180, 203, 205, 231 Fiji, 64 Filipino, 84, 91 films, 38, 154 filtration, 303 financial distress, 187 financial resources, 44, 196, 318 financial support, 150 financial system, 269 Finland, 88, 207, 230 first aid, 318 first generation, 306

338

Index

fishing, 83 flavonoids, 319, 327 flexibility, 209, 237 fluid, 166 focal seizure, 9, 291 focus groups, 34, 167, 171 folic acid, 130, 325, 327 follicle, 120 foundations, 32, 103 fractures, 178, 302 fragility, 291 France, 148, 289, 309 fraternal twins, 258 freedom, 53, 191 frontal lobe, 79, 87, 91, 290, 291, 295 funding, xii, 37, 61, 62, 64, 66, 69, 103, 267, 269 fusion, 270

G gait, 294 Gallup Poll, 87 garbage, 150 gender differences, ix, 7, 35, 115, 116, 117, 118, 123, 126, 127, 130, 132, 138, 231 gender effects, 12 gender role, 124 general anesthesia, 322 general practitioner, 30, 166, 173 generalized seizures, 13, 299, 300, 302 generalized tonic-clonic seizure, 95, 117, 187, 292, 295 genetic factors, 262 genetics, xvii genre, 38 Georgia, xi, xii, xiii, 283 Germany, 96, 118, 137, 285 gingival, 315 ginseng, 323 gland, 119, 325 globalization, 31, 171 glucose, 198, 199, 311 God, 146, 169, 171, 173, 317 Google, 145 government policy, 62 Great Britain, 96, 112 Greece, 147 Greeks, 147 growth rate, 63 guidance, xvi, 129, 195, 198, 208, 219, 249, 251, 285

guidelines, 118, 129, 131, 134, 136, 266, 270, 309 guilt, 129, 250, 253 guilty, 155, 156, 161, 269

H hair, 124, 141, 182, 201, 203, 205 hair loss, 124 hallucinations, 151, 294, 322 happiness, 122, 124 harassment, 105 harmony, 191 hazards, 294 head injuries, 66 head injury, 116, 132 head trauma, 314 headache, 6, 10, 12, 305, 321, 322, 323, 324, 325 health care costs, 64, 178, 260, 304 health care professionals, 84, 127, 130, 137 health care system, 35, 164, 173, 267, 270 health education, 65, 86 health expenditure, 61 health information, 73, 75, 76, 78, 83, 88, 276, 280 health insurance, 61, 62, 63, 78 health locus of control, 16 health problems, 32, 34, 50, 100, 124, 125, 202, 208, 218, 219, 220, 221, 229, 231, 243, 266, 278 health psychology, xiii, 201 health services, xii, xvi, 26, 60, 61, 62, 63, 64, 65, 69, 85, 166, 266, 267, 275, 277, 283, 284, 286 health status, 44, 57, 58, 283 health systems, ix, 59, 60, 61, 69, 163, 269 health-promoting behaviors, 217 heart disease, xii, 24, 58, 255, 260, 278, 285 heartburn, 323 heavy metals, 320 hegemony, 170 height, 124, 148, 158 helplessness, 49, 50, 52, 54, 57, 255, 264 hematoma, 299 herbal medicine, x, 66, 313, 319, 320 heredity, 147 heterogeneity, 229, 241 high blood pressure, 322, 323 high school, 5, 77, 78 hippocampus, 300, 320 Hispanic population, 31 Hispanics, 31, 32, 77 HIV/AIDS, 24, 25, 66, 67, 68, 90, 144 Hmong, 31, 33, 34, 39, 84, 88, 90, 164, 172

Index holistic care, 170 home ownership, 80 homeostasis, 324 homework, 271 Honduras, xvii, 313, 314, 316, 317, 318, 329 honesty, 217 Hong Kong, 56, 70, 105, 277 hookworm, 66 hopelessness, 263 hospitalization, 30 host, 252 hostility, 191, 228, 235, 240, 260 household income, 81, 82 housing, 8, 80 hue, 151 human immunodeficiency virus (HIV), 24, 25, 26, 66, 67, 68, 70, 90, 105, 144, 159, 203, 205, 324 human performance, 143, 144, 145, 146, 151, 158 human resources, 101 human rights, 103 Hungary, 9, 26, 81, 89 hunting, 147 husbandry, 144 hybrid, ix, 163, 165 hybridity, 164, 171, 174 hygiene, 190 hyperactivity, 190, 214, 215, 223, 224, 230, 231, 321 hyperandrogenism, 136 hypercholesterolemia, 23 hyperplasia, 315 hypersensitivity, 294, 295 hypertension, 23, 58, 128, 201, 262, 266, 303, 323, 324, 325 hypnosis, 151 hypoglycemia, 293, 322, 323 hypokalemia, 322 hyponatremia, 292, 293, 304 hypotension, 294, 295, 306, 322 hypothalamus, 119 hypothermia, 324 hypothesis, 4, 11, 23, 236, 237, 291

I iatrogenic, 158 Iceland, 80 ideal, 71, 158, 177, 319 ideals, 145 identical twins, 258 idiopathic, 74, 116, 203, 213, 215, 223, 224, 293

339

idiosyncratic, 45, 46 image, 107, 124, 217 imagery, 37, 325 images, 36, 40 immigrants, 31, 33, 34, 35 immigration, 31, 33, 49 immunodeficiency, 203, 324 impacts, 64, 116, 123, 183, 236, 259 impairments, 49, 79, 104, 114, 218, 219, 308 imports, 68 impulses, 152 impulsive, 215, 218 impulsivity, 230 in transition, 173 in utero, xiv, 128, 134, 135 inattention, 191, 215, 219, 231 incarceration, 148, 150, 151, 152, 156 incidence, 88, 97, 100, 109, 116, 118, 119, 120, 128, 129, 132, 137, 139, 140, 141, 154, 178, 278, 290, 291, 293, 299, 301, 302, 325, 329 incompatibility, 146 independence, 45, 46, 49, 94, 104, 186, 216, 252 India, 33, 36, 63, 64, 65, 68, 70, 71, 80, 91, 96, 105, 114, 140, 170, 173, 174, 329 Indians, 64 indigenous peoples, 33 indirect costs, 30 indirect effect, 287 individual character, 229 individual differences, 126 individualism, 32 inducer, 304 induction, 304 inequity, 60, 107 infant mortality, 158 infants, 85, 88, 140, 205, 220, 326 infarction, 249, 310 infertility, 117, 119, 120, 132 inflammation, 262 informal sector, 62 information sharing, 267 information technology, 103 ingestion, 180, 182 inheritance, 152 inhibition, 211, 300, 319 inhibitor, 310, 324 initiation, 131, 132, 189, 277 inmates, 148 insane, 148, 149, 152, 156, 157 insanity, 81, 100, 155, 156, 161

340

Index

insecurity, 216 insomnia, 295, 305, 321, 322, 323, 324 Institute of Education Sciences, 91 institutionalisation, 49 instructional materials, 76 insulin, 199, 202, 205 integration, ix, 53, 73, 81, 107, 153, 238, 239, 276, 285 intellectual property, 71 intelligence, 79, 98, 139, 215, 216, 223, 251, 252, 254 interdependence, 238 interface, 154, 156, 162 interference, 98, 158, 263, 323 internalised, 144 internalizing, 176, 190, 191, 198, 212, 216, 230, 232 internist, 249 internship, xiii interpersonal communication, 83 interpersonal interactions, 49 interpersonal relations, 44, 48, 260, 287 interpersonal relationships, 44, 48, 260, 287 interpersonal skills, 266, 272 interrelations, 21, 25 intervention, x, xiii, 2, 4, 14, 32, 37, 48, 70, 85, 91, 109, 114, 152, 157, 158, 167, 175, 184, 191, 193, 194, 196, 197, 199, 208, 219, 225, 228, 239, 240, 241, 251, 253, 254, 274, 275, 277, 279, 285 intervention strategies, 70, 175 intoxication, 251 IQ scores, 79 Iran, 3, 54, 187 Iraq, 96, 107 Ireland, 96, 105 iron, 85, 88 irony, 152, 153, 156 irritability, 2, 6, 10, 12, 47, 158, 253, 259, 322 ischemia, 322 isolation, 36, 45, 48, 81, 97, 98, 120, 252, 263 Israel, 106, 295, 306, 309 Italy, 21, 25, 87

J Japan, 98, 267 job performance, 263, 283 job training, 104, 106 Jordan, 106, 171, 173 jurisdiction, 49

K Kentucky, xiv, 93 Kenya, 113 kidney, 303, 322, 323 kidney stones, 322 knees, 36 Korea, 83, 96, 105, 112, 258, 267 Kuwait, 107

L labeling, 23 labor force, 21 laboratory tests, 294, 297 labour force, 21 lack of control, 2 landscape, 32, 39 language barrier, 32, 33 language impairment, 224 languages, 65, 66, 84, 259 Laos, 64, 65, 67 later life, 49, 123, 128, 306 laterality, 119, 135, 256, 311 Latin America, 97, 109, 261, 278, 314 lawyers, 152 learned helplessness, 52, 54 learning, 35, 76, 82, 105, 123, 154, 223, 248, 251, 268, 271 learning disabilities, 105, 223 legal protection, 107 legislation, ix, 24, 93, 94, 103, 104, 152 leisure, 16, 97 lesions, 210, 213, 290, 291, 297, 300, 302 leukopenia, 322 level of education, 78, 96, 98, 234 life expectancy, 236 life quality, 240 life satisfaction, 44, 50, 286 lifestyle behaviors, 202, 262 lifestyle changes, 4, 252 lifetime, xi, 46, 57, 97, 123, 223, 252, 258, 261 limb weakness, 6, 12 Limitations, 13 liquid chromatography, 182, 203 liquids, 317 literacy, ix, 31, 32, 73, 74, 75, 76, 77, 78, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 91, 275 liver, 303, 304, 315, 321, 322, 323, 324

Index liver damage, 323 liver failure, 323 living arrangements, 5, 44 living conditions, 66, 150 lobbying, 25, 149 lobectomy, 54, 55, 89 localization, 121, 298, 302 locus, 16, 47, 157, 189, 201, 248, 255 loneliness, 217 longitudinal study, 260 loss of appetite, 250, 323 loss of consciousness, 292, 293, 294, 297, 322 lung disease, 262

M macrobiotics, 168 magazines, 37, 83, 87 mainstream society, 34 major depression, 56, 248, 250, 252, 253, 264, 265, 269, 275, 278, 281, 282, 283, 284, 286, 287 major depressive disorder, 46, 47, 48, 253, 254, 258, 281, 287 majority, 6, 9, 21, 50, 64, 68, 76, 83, 94, 95, 96, 101, 120, 207, 211, 214, 218, 224, 251, 269, 276, 291, 294 malaria, xii, 66, 159, 316 malnutrition, 83, 150, 303 maltreatment, 259 mammography, 84 management, ix, xi, xii, xiii, xvi, xviii, 13, 31, 44, 48, 52, 53, 54, 65, 71, 73, 75, 84, 85, 86, 87, 89, 90, 112, 114, 115, 131, 134, 143, 144, 153, 154, 158, 159, 165, 176, 184, 189, 190, 191, 193, 194, 195, 196, 197, 198, 199, 200, 201, 202, 203, 240, 242, 251, 262, 266, 268, 269, 270, 271, 272, 274, 275, 276, 277, 278, 280, 281, 282, 283, 284, 286, 287, 302, 309, 311 mania, 47, 151, 322, 323, 324 manic, 323 manic episode, 323 manufacture, 68, 154 manufacturing, 320 marginalization, 34, 38 marital status, 5, 81, 105, 122, 125, 187, 253 marriage, 33, 40, 49, 116, 120, 122, 124, 125, 132 married women, 125 marrow, 204, 315 Marshall Islands, 64 Marx, 150

341

mass media, 83, 87 mass spectrometry, 182 matrix, 24 media, 32, 40, 78, 83, 87, 112, 154 median, 102, 116, 301 Medicaid, 78 medical care, 44, 63, 69, 73, 113, 150, 170, 193, 198, 199, 280 Medicare, 78 medication, xi, xiv, 1, 2, 3, 7, 11, 12, 15, 44, 48, 52, 71, 85, 87, 91, 104, 129, 130, 137, 141, 161, 163, 170, 178, 179, 180, 181, 182, 183, 184, 187, 188, 189, 190, 191, 192, 193, 194, 195, 196, 200, 201, 202, 203, 205, 224, 230, 232, 233, 240, 242, 247, 248, 251, 252, 253, 255, 261, 266, 268, 271, 272, 276, 277, 290, 292, 304, 305 medication adherence, xi, 181, 187, 188, 193, 194, 196, 197, 202, 203, 205, 255, 276 medication compliance, 200, 201, 242, 252 medicines, vii, x, 60, 64, 66, 67, 68, 69, 72, 174, 317, 320 melatonin, 326 membership, 105 memory, xv, 79, 89, 90, 128, 184, 263, 268, 279 menarche, 134 meningismus, 323 meningomyelocele, 325 menopause, 117, 127, 130, 134, 323 menstruation, 1, 3, 7, 12, 117, 158, 323 mental disorder, 145, 148, 151, 153, 166, 174, 247, 248, 249, 261, 264, 267, 273, 277, 283 mental health, 32, 33, 34, 41, 44, 48, 84, 100, 124, 125, 126, 127, 129, 132, 139, 152, 155, 156, 208, 218, 219, 220, 221, 222, 224, 229, 233, 240, 243, 265, 266, 267, 269, 270, 276, 277, 278, 283, 284, 285 mental health professionals, 84, 265, 277 mental illness, xii, 33, 83, 152, 162, 249, 264, 267, 279, 280 mental life, 251 mental retardation, 213, 215, 220, 224, 236 meridian, 324 meta-analysis, 116, 128, 137, 197, 200, 204, 218, 223, 225, 230, 245, 260, 272, 273, 278, 280, 285, 286, 287, 325 metabolic disorder, 290, 297 metabolic disturbances, 289 metabolism, 185, 303, 304, 311, 320, 322, 323, 324 metals, 320 methodology, xi, 10, 32, 164, 187, 237, 249, 319

342

Index

Mexico, 319 mice, 140, 300, 319, 320, 326, 327, 328 migrants, 172 migration, 35, 128 mind-body, ix, 143, 145, 157, 158 minorities, 31, 33 minority groups, 32, 35 misconceptions, 31, 32, 37, 83 misunderstanding, 49, 97 modelling, 60 moderates, 152 moderators, 208, 215, 218, 220 modern society, 124 modification, 102, 187, 196, 222, 272 Mongolia, 64 monitoring, 2, 63, 71, 149, 176, 180, 182, 184, 185, 193, 194, 196, 199, 200, 201, 205, 269, 270, 298, 306, 308, 309 monoamine oxidase inhibitors, 271 mood change, 259 mood disorder, 46, 51, 116, 126, 153, 250, 252, 253, 255, 278, 281 mood states, 51, 54, 252 Moon, 88, 154, 161 moratorium, 252 morbidity, 46, 55, 126, 150, 168, 175, 176, 177, 180, 248, 255, 281, 282, 305 morphology, 299 mortality rate, 83, 118, 302 motivation, 164, 188, 196, 251, 252, 265, 273, 274, 284 motor activity, 294 movement disorders, 297, 298 MRI, 295, 297, 298 multidimensional, 209 multiple factors, x, 46, 182, 263, 303 multiple sclerosis, xiv, 109, 275, 284 murder, xvii, 143, 152, 155, 156, 162 music, x, 36, 39, 313, 325 Muslims, 174 mutation, 145, 310, 311 myalgia, 297 myocardial infarction, 249 myoclonus, 294, 300, 308, 311 myopathy, 322, 327 mythology, 146, 152

N narcotics, 321

narratives, xv, 30 National Center for Education Statistics, 89, 91 national emergency, 68 National Health Service, 69, 166 national income, 64 National Institutes of Health, xiii, xvii, 41, 89 nausea, 6, 12, 195, 295, 322, 323 negative attitudes, 50, 98, 99, 107, 124 negative consequences, 101 negative mood, 272 negative relation, 98, 193 neglect, 34, 187 negotiating, 33, 67 nerve, 52, 57, 74, 91, 315 nervous system, 188, 208, 212, 224, 231, 320, 324 Netherlands, 78, 96, 328 neural network, 308 neural networks, 308 neurobiology, 146 neurodegeneration, 134, 138 neurofibrillary tangles, 300 neurogenesis, 128 neuroimaging, xv, xvi neurological disease, xv, xvii, 299, 314, 327 neurologist, 2, 12, 64, 153, 249 neurons, 311, 320, 324 neuropathy, 145, 303, 311 neurophysiology, xiii, xv, 145 neuroprotection, 320 neuropsychiatry, 143, 145, 153, 154, 161, 162 neuropsychological tests, 79 neuropsychology, xi, xvi, 153 neuroscience, xv, 145, 153, 242 neurosyphilis, 299 neurotransmission, 313, 324 neurotransmitter, 259, 300 New England, xi, xvii, 225 New South Wales, xii New Zealand, xii, xvi, 26, 173 Nigeria, 66, 70 Niue, 64 non-steroidal anti-inflammatory drugs, 322 normal aging, 299, 308, 311 normal children, 214 North America, 113, 140, 148 Northern Ireland, 105 Norway, 3, 223, 226 nurses, 83, 161, 184 nursing, xi, xii, 54, 149, 161, 242 nutrition, 31, 316

Index

O obesity, xiii, 83 occupational therapy, xiv oil, 155, 319, 321, 322 one dimension, 38 opiates, 252 opportunities, vii, ix, 4, 18, 19, 45, 93, 94, 103, 252 Opportunities, 105 optimism, 45 optimization, 73 organizing, 247 orthostatic hypotension, 294, 295, 306 osteomalacia, 304 osteoporosis, 130, 315, 325 otherness, 35 outpatients, 51, 58, 98, 101, 255 ovaries, 117, 136 overlap, 268 overseas aid, 69 ovulation, 1, 7 ovum, 120 ownership, 80

P Pacific, 64, 72, 77 Pacific Islanders, 77 pain, 44, 122, 253, 259, 260, 282, 295, 322, 323, 325 Pakistan, 3, 15, 164, 166, 167, 168, 169, 170, 172, 173, 174 panic disorder, 250 parallel, 164, 165, 166, 168, 171, 305 paralysis, 148, 157 paranoia, 47 parental attitudes, 231, 235, 243 parenting, xiii, 216, 218, 233, 235, 236, 237, 245, 246 parenting behaviours, 236 parenting styles, 216 paresis, 292 parity, 267 parkinsonism, 301, 307, 310 partial seizure, 2, 6, 7, 8, 13, 35, 47, 51, 95, 117, 135, 139, 221, 225, 232, 243, 245, 291, 292, 295, 300 patents, 68 pathogenesis, 24, 54, 140, 254 pathology, 152, 157, 158, 259, 300 pathophysiology, 82

343

pathways, 208, 218, 219, 329 patient care, xvii, 34, 249 peer rejection, 211 peer relationship, 212, 217 penalties, 146 penis, 158 perceived control, 4, 256 perfectionism, 143, 145 performance, 37, 61, 78, 79, 87, 111, 143, 144, 145, 146, 151, 158, 182, 203, 209, 211, 221, 263, 271, 274, 283, 300 perfusion, 303 peripheral neuropathy, 311 permission, iv perpetrators, 147 perseverance, 38 personal accounts, 168 personal control, 139 personal goals, 208 personal identity, 50, 94 personality traits, 227 persons with disabilities, 94, 103, 104, 105, 109 PET, 250, 311 pharmaceuticals, 67, 71, 156, 205 pharmacokinetics, 303, 309 pharmacological research, vii, viii pharmacological treatment, 168, 169 pharmacology, 145, 180 pharmacotherapy, 326 phenomenology, 56, 137, 256 phenothiazines, 322 phenotype, 301, 310 phenytoin, 67, 128, 200, 203, 303, 304, 311 Philippines, xii, xiii, 72 photosensitivity, 324 physical activity, 247, 316 physical health, 44, 124, 281, 285 physical treatments, 157 physiological factors, 11 physiology, 3, 147, 188, 250 pilot study, 109, 276, 280, 286 pineal gland, 325 plants, 319, 320, 327, 328 plasma levels, 139, 182, 189, 203, 205 plasticity, 139 pleasure, 259, 269 pluralism, 170, 173 poetry, 36 police, 95, 112 policy makers, 27

344 policy reform, 277 politics, 169 polycystic ovarian syndrome, 119 poor performance, 79 positive attitudes, 84, 217 positive correlation, 250, 320 positive interactions, 260 positive reinforcement, 219 positive relationship, 193, 208, 209, 217 positivism, 146 postnatal exposure, 140 poverty, 62, 63, 66, 68, 74, 77, 169 poverty line, 63, 68 praxis, 34 prayer, x, 325 precedent, 37 predictability, 308 predictive validity, 203 predictor variables, 22, 81 prefrontal cortex, 139, 311 pregnancy, 1, 7, 12, 66, 127, 128, 129, 130, 131, 132, 134, 135, 136, 138, 140, 141, 158, 205, 325, 327 prejudice, 49, 80, 81, 152, 263 prejudices, vii, 49, 154, 249 preschool, xvi, 214, 217, 219, 221, 224, 225, 245 preschool children, xvi, 221, 224, 225, 245 preschoolers, 222 prestige, 170 preterm delivery, 128 prevention, 55, 76, 88, 140, 283, 307, 326 primary school, 112 probe, 183 problem behavior, 210 problem behaviors, 210 problem drinking, 273 problem solving, 209, 216, 228, 236, 237, 253 problem-focused coping, 236, 241 problem-solving, 197, 198, 237, 275 procurement, 71 prodromal symptoms, 295 productivity, 30, 201, 259, 260, 261, 280, 283, 286 prognosis, 15, 57, 90, 114, 137, 157, 225, 246, 293, 302, 309 project, 37, 65, 67, 68, 88, 121, 171, 240, 277 proliferation, 168 pronunciation, 75 proposition, 157, 158 prosocial behavior, 210, 211, 212, 219 protective factors, 216, 217, 219

Index psychiatric diagnosis, 211, 215 psychiatric disorders, 227, 229, 238, 247, 249, 250, 259, 293, 295, 306, 322 psychiatric illness, xvi, 248 psychiatric morbidity, 255, 282 psychiatric patients, 307 psychiatrist, xv, xvi, 148, 152, 153, 156, 249, 270 psychiatry, xv, xvi, 113, 148, 149, 151, 152, 153, 155, 156, 157, 162, 228, 247, 248, 249, 250, 270 psychoanalysis, 144, 249, 285 psychological adaptations, 38 psychological distress, 22, 48, 52, 53, 121, 259 psychological problems, 228, 232, 233, 234, 238 psychological states, 34 psychological well-being, 51, 88, 135, 140, 263 psychologist, xiv, xvi, xvii, 277 psychology, xi, xiii, xiv, xvi, 55, 136, 139, 144, 156, 157, 161, 165, 201, 204, 224, 231, 272, 287 psychometric properties, 183 psychopathology, x, 47, 50, 53, 56, 135, 189, 208, 211, 212, 213, 214, 215, 218, 225, 227, 228, 229, 230, 231, 232, 233, 234, 236, 237, 238, 240, 241, 243, 245, 255 psychopathy, 151 psychopharmacology, 84 psychoses, 157 psychosis, 153, 230 psychosocial conditions, 18 psychosocial development, 208, 219, 224 psychosocial factors, xi, 16, 47, 120, 122, 126, 218, 314 psychosocial functioning, 48, 49, 93, 94, 98, 123, 188, 232, 253 psychosomatic, 245 psychosurgery, 157 psychotherapy, xvii, 55, 144, 157, 254, 272, 274, 275, 279, 281, 283, 284, 286 psychoticism, 251 psychotropic drugs, 292, 297, 311 puberty, 124, 131 public awareness, 89 public domain, 29 public education, viii, 29, 30, 31, 32, 83, 88 public finance, 63 public health, 60, 62, 64, 65, 66, 69, 75, 80, 83, 107, 247, 248, 267, 276, 277, 278 public opinion, 37 public policy, 109, 110 public sector, 169 public service, 64, 166

Index public-private partnerships, 67 pulmonary hypertension, 323 punishment, 83, 156 purpura, 322

Q quality of life, viii, ix, xi, xiii, xiv, xviii, 17, 18, 31, 43, 44, 45, 46, 48, 49, 50, 52, 53, 54, 55, 56, 57, 58, 82, 87, 93, 107, 112, 114, 121, 124, 133, 134, 154, 168, 176, 177, 180, 188, 197, 201, 216, 222, 225, 226, 233, 240, 242, 244, 245, 246, 247, 248, 254, 257, 258, 260, 261, 262, 263, 264, 267, 272, 276, 278, 279, 282, 283, 284, 286, 287, 302, 308, 309, 314 questioning, 183

R race, 33, 81, 105, 158, 265 racism, 33 randomized controlled clinical trials, 193 rapid eye movement sleep, 295, 299 rash, 305, 322, 323 rating scale, 211 reactions, 18, 19, 38, 45, 144, 177, 198, 214, 315, 322, 324 reactivity, 238, 239 reading, 32, 75, 76, 86 reading comprehension, 75, 86 reading skills, 75 reality, 44, 100, 105, 152, 200 reasoning, 153, 203, 248, 254 recall, 86, 99, 179, 184 receptors, 319, 320 recognition, xi, 2, 23, 31, 54, 75, 177, 209, 254, 256, 257, 258, 265, 266, 267, 268, 269, 277, 278, 287, 308 recommendations, iv, 12, 31, 147, 175, 176, 190, 195, 199, 200, 203, 243, 266, 267, 271, 303 reconstruction, 202 recruiting, 103, 105 recurrence, 198, 272, 273, 287, 290, 292, 302 reductionism, 250 reforms, ix, 59, 60, 63 refugees, 31, 33 regression, 21, 22, 82, 140 regression analysis, 22

345

rehabilitation, xiv, xvii, 62, 66, 89, 94, 103, 106, 108, 109, 110, 113 Rehabilitation Act, 103, 112 rehabilitation program, 106 reinforcement, 194, 197, 200, 219, 274 rejection, 168, 221, 235, 253 relationship quality, 236, 237 relatives, 168, 232, 315, 318, 327 relaxation, 4, 7, 14, 273, 313, 325 relevance, 17, 18, 249, 256 reliability, 19, 137, 185, 200 religion, 105, 146, 152 religious beliefs, 164 remission, 45, 50, 96, 100, 104, 111, 272, 275 replacement, 272 replication, 283 reproduction, 17, 18 reputation, 143, 156 resilience, 38, 208, 216 resistance, 177, 216 resolution, 238 resources, vii, 32, 33, 34, 44, 61, 63, 64, 66, 73, 101, 106, 107, 187, 196, 216, 233, 236, 241, 259, 262, 267, 269, 314, 316, 318, 327 responsiveness, 90 restless legs syndrome, 295 restructuring, 61, 62, 63, 67, 102, 253, 269, 275 retardation, 84, 213, 215, 220, 224, 226, 236 retirement, 50 revenue, 62, 63 rhythm, 295, 299 rights, viii, 31, 76, 94, 103, 104, 106, 107, 110, 267 risk factors, 47, 116, 127, 132, 136, 137, 140, 208, 213, 216, 218, 219, 233, 241, 243, 244, 255, 262, 277, 282, 285, 286, 308 routines, 196 rural areas, 64, 65, 80, 96, 315 rural people, 69 rural population, 68, 71, 166 Russia, 267, 284

S sadness, 259 saliva, 179, 182, 186, 190 SARS, 83 Saudi Arabia, 199 savings, 277 scaling, 60, 89 schema, 49, 239, 241

346 schizophrenia, 144, 148, 157, 223, 250, 285 schooling, 78, 123 scientific knowledge, 38 scientific method, 249 scientific understanding, 30 sclerosis, xiv, 79, 109, 275, 284 screening, 55, 75, 81, 82, 84, 91, 173, 266, 268, 269, 270, 274, 277, 281, 286 second generation, xiv, 35 secretion, 117, 119, 121 sedative, 292, 293, 304, 323, 328 segregation, 148 selective serotonin reuptake inhibitor, 250, 304, 324 self esteem, 124 self help, 277 self-concept, 217, 231, 238 self-confidence, 106 self-control, 4, 5, 9, 11, 12, 15, 16, 211, 237 self-efficacy, 45, 98, 106, 202, 216, 246, 264, 274, 276, 280 self-esteem, 38, 44, 49, 50, 98, 107, 215, 216, 217, 231, 236, 262, 264 self-expression, 37 self-image, 107, 217 self-management behaviors, 274, 277 self-monitoring, 193, 196 self-perceptions, 232 self-regulation, 202, 211 self-reports, 23, 236 sensation, 296 sensations, 273 sensitivity, 117, 137 serotonin, 250, 258, 271, 304, 324 serotonin syndrome, 324 serum, 176, 177, 178, 179, 180, 182, 185, 186, 187, 189, 190, 193, 297, 321, 323, 324 service provider, 61, 167, 172 SES, 80, 187, 198 sex, 78, 96, 105, 116, 117, 119, 132, 139, 187, 250, 251, 307, 311 sex differences, 117, 139 sex steroid, 119, 132 sexual abuse, 251 sexual activities, 134 sexual activity, 122, 254, 316 sexual orientation, 105 sexuality, xvii, 120, 138 shame, ix, 26, 50, 143, 144, 217 shape, 34, 165 shelter, 67, 106

Index short supply, 66, 145 shortage, 24, 130 sibling, 235 siblings, 204, 212, 217, 219, 226, 229, 231, 234, 241 sickle cell, xiii, 203 side effects, 14, 50, 74, 124, 184, 185, 188, 190, 192, 195, 198, 263, 265, 271, 303, 304, 305, 321, 322, 323, 324 signals, 107 significance level, 5 signs, viii, 1, 2, 4, 5, 6, 9, 11, 12, 13, 14, 144, 213, 250, 297, 302, 307 Sinai, xv, 29 Singapore, 3, 16 skills training, 194 skin, 305, 323, 324, 325 sleep deprivation, 1, 3, 7, 10, 12, 13 sleep disturbance, 253, 268, 309 smoking, 83, 262, 273, 279 smoking cessation, 273 sociability, 213 social acceptance, 31, 69, 84, 99, 209 social activities, 43, 45, 217, 263 social adjustment, 209, 227, 237, 256 social behavior, 222, 241, 325 social capital, xvi social care, xiv, 146, 159, 167, 173 social change, 46, 150 social class, 79 social cognition, 221 social competence, ix, xvi, 207, 208, 209, 210, 211, 212, 214, 215, 216, 217, 218, 219, 220, 221, 222, 223, 224, 225, 231, 238 social consequences, 17, 18, 27, 50 social context, 32, 35, 101, 149, 155, 164, 165, 203, 209, 218 social control, 149, 151, 152 social desirability, 22, 184, 198 social development, 208, 217, 219, 232, 238 social deviance, 144, 145, 146 social environment, 35, 150, 209, 216, 217 social events, 45 social exclusion, vii, xvi, 26, 34, 150 social group, 151 social identity, 23, 111, 282 social integration, 107 social justice, viii social network, 45, 165, 216 social order, 143, 144 social participation, 94, 97, 208, 217

Index social problems, x, 98, 110, 124, 209, 212, 215, 227, 230, 231, 232, 238, 241 social sciences, viii, 29, 30, 38 social situations, 101, 210, 235, 263 social skills, 123, 207, 208, 209, 210, 211, 212, 213, 215, 218, 219, 221, 222, 231, 240 social status, 2, 125, 134, 170 social structure, viii social support, 45, 47, 53, 107, 124, 198, 223, 233, 236, 253, 263, 274, 276, 286 social welfare, 61 social withdrawal, 211, 230, 232, 238 socialization, xviii socioeconomic background, 24 socioeconomic status, 80, 176, 187, 193, 234, 264 sodium, 140, 322 somnolence, 315 South Africa, 67, 71, 105, 258, 287 South Asia, 34, 164, 166, 167, 168, 169, 170, 172, 173, 174 South Korea, 83, 96 Southeast Asia, 25 Spain, xv, 227 spastic, 310 specialists, 64, 277 species, 320, 321, 323 speech, 6, 11, 12, 36, 237, 292, 321 sperm, 87, 121, 132 spin, 146 spinal cord, 325 spirituality, 265 spontaneous abortion, 128 sprouting, 320 Sri Lanka, xii, 33 staffing, 66 standardization, 320 stars, 37 statistics, viii, 17, 18, 19, 21 status epilepticus, xvi, 31, 39, 118, 134, 136, 137, 140, 177, 291, 292, 294, 299, 300, 302, 306, 309, 310 stenosis, 294 stereotypes, 38, 49 stereotyping, 23 stigma, viii, ix, xi, 17, 19, 22, 23, 24, 25, 26, 27, 29, 30, 31, 32, 33, 36, 37, 38, 39, 43, 45, 46, 47, 48, 49, 50, 52, 53, 55, 56, 57, 64, 80, 82, 83, 97, 99, 100, 102, 107, 108, 110, 111, 112, 113, 143, 144, 146, 151, 154, 157, 159, 160, 190, 198, 217, 222, 223, 225, 232, 233, 243, 244, 247, 248, 252, 253,

347

255, 263, 264, 265, 268, 276, 277, 278, 279, 282, 315, 318 stigmatized, ix, 253, 264, 315 stomach, 195, 322, 324 storage, 88 streams, 269 stressful life events, 262 stressors, 124, 236, 259, 276 stroke, x, 66, 116, 132, 289, 293, 295, 301, 303, 306, 307, 308, 310, 314, 322 subdomains, 209 subdural hematoma, 299 subgroups, 31, 121 subjective experience, ix, xii, 2, 3, 5, 13, 14, 143, 144 sub-Saharan Africa, 32, 39, 97, 112 substance abuse, xvi, 196, 252 substance use, 250, 252 substitution, 68 suicidal behavior, 136 suicidal ideation, 47, 255, 271, 278, 282 suicide, 47, 54, 57, 127, 134, 135, 140, 247, 248, 253, 254, 255, 256, 259, 261, 282 suicide attempts, 54, 127, 255, 282 suicide rate, 47, 261 supernatural, x, 147, 148, 166, 314, 315 supervision, 60, 129, 149, 184, 191, 196, 203 supervisor, 101 support services, 173 suppression, 324 Supreme Court, 104 surgical intervention, 45 surveillance, 80, 112, 118, 149 survey, viii, 5, 15, 19, 20, 22, 23, 25, 26, 31, 54, 55, 58, 64, 76, 77, 78, 79, 80, 81, 83, 85, 87, 95, 96, 98, 100, 102, 108, 109, 110, 134, 137, 138, 139, 140, 201, 202, 221, 223, 243, 252, 276, 283, 309, 317, 318 survivors, 151 susceptibility, 4, 117, 126, 132, 139, 140, 250, 290, 300 Sweden, 225, 244 Switzerland, 84, 87, 118, 134, 205 sympathy, 38 symptoms, viii, x, 1, 2, 4, 5, 6, 9, 10, 12, 13, 14, 15, 16, 22, 44, 47, 48, 50, 58, 144, 170, 176, 191, 198, 213, 227, 230, 231, 236, 238, 242, 250, 251, 253, 254, 256, 259, 260, 262, 264, 265, 266, 268, 270, 271, 272, 275, 276, 278, 281, 283, 284, 285, 287, 289,292, 293, 294, 295, 300, 315, 319, 322, 324, 325

348

Index

syndrome, 88, 119, 124, 129, 132, 133, 136, 139, 213, 214, 220, 230, 250, 293, 296, 309, 324 syphilis, vii, 148

T tachycardia, 322, 323 tactics, 68 Taiwan, xiv, 3, 258, 267 tangles, 300 Tanzania, 80, 141 target variables, 81 technical assistance, 105 teenage girls, 124 teens, 216, 226 teeth, 36, 196 telecommunications, 104 temperament, 216, 236 temperature, 316 temporal lobe, 13, 15, 33, 47, 54, 55, 56, 57, 79, 88, 89, 119, 135, 136, 160, 221, 251, 252, 254, 285, 291, 298, 302, 320, 329 temporal lobe epilepsy, 13, 15, 33, 47, 56, 57, 79, 88, 119, 136, 160, 221, 251, 254, 285, 320, 329 tension, 23, 158 terminal illness, 23 territory, 297 tertiary syphilis, 148 testing, 12, 179, 193, 196, 197, 199, 249, 251, 277, 294 testosterone, 117, 121, 139 Thailand, 61, 62, 71, 111 therapeutic approaches, 228 therapeutic intervention, 48 therapy, xiv, 51, 68, 71, 74, 84, 91, 115, 117, 118, 120, 135, 150, 156, 158, 163, 175, 176, 178, 180, 182, 184, 190, 192, 193, 194, 201, 203, 204, 205, 245, 246, 250, 265, 271, 272, 274, 275, 277, 280, 281, 282, 283, 284, 285, 286, 287, 290, 303, 305, 314, 325, 326, 329 Third Reich, 158 Third World, 70 thoughts, 144, 158, 253, 259, 271, 273, 274, 324 thrombocytopenic purpura, 322 time constraints, 269 time frame, 6, 9, 183 time use, 141 tissue, 158 Title I, 104 tobacco, 196, 252

toddlers, 131 Togo, 57 tones, 322 tonic, 2, 6, 35, 51, 95, 117, 187, 188, 264, 291, 292, 295, 297, 322 tonic-clonic seizures, 51, 95, 117, 187, 188, 264, 291, 292, 322 torticollis, 323 toxic side effect, 303 toxic substances, 320 toxicity, 304, 315, 323, 324 trade-off, ix traditional practices, 169 traditions, 4, 167, 171 training, xii, xvi, xvii, 60, 64, 65, 66, 85, 90, 94, 102, 104, 105, 106, 149, 158, 185, 194, 268 trait anxiety, 126 traits, 38, 209, 227, 228, 251 trajectory, 44 transformation, 34, 172 transfusion, 83 transient ischemic attack, 289, 292, 295, 297 transmission, xii, 148, 243 transplantation, 200, 204 transport, 62 transportation, 49, 77, 102, 103, 104, 106, 265, 319 trauma, 116, 118, 291, 293, 314, 316 traumatic brain injury, 110 traumatic events, 259 treatment methods, 11, 153, 268 tremor, 322 trial, xii, 51, 56, 57, 74, 89, 91, 188, 196, 199, 200, 204, 205, 244, 253, 275, 276, 278, 279, 283, 285, 287, 305, 310, 329 triangulation, 239 tribesmen, 317, 318 tricyclic antidepressant, 271, 301, 323 tricyclic antidepressants, 271, 301, 323 triggers, viii, 1, 5, 6, 7, 10, 12, 13, 14, 148 Trinidad and Tobago, 114 tryptophan, 250 tuberculosis, vii, 66, 148, 159 tumours, 291 type 1 diabetes, 245, 246

U underlying mechanisms, 153, 221 unemployment rate, 94, 95, 96 unhappiness, 158

Index United Kingdom (UK), v, ix, xi, xii, xiv, xvi, xvii, 3, 25, 26, 31, 34, 37, 39, 40, 49, 53, 55, 69, 79, 80, 98, 100, 105, 111, 115, 120, 128, 136, 138, 139, 143, 145, 161, 163, 164, 165, 166, 167, 168, 169, 170, 171, 172, 173, 174, 221, 229, 242, 266, 282, 307 universal access, 69 urban area, 64, 96 urban areas, 64, 96 US Department of Health and Human Services, 33, 41 use of force, 316

V vagina, 158 vagus, 52, 57, 74 vagus nerve, 52, 57, 74 validation, 107, 148, 184, 298 variations, 230, 306 vascular dementia, 290, 301 vascular diseases, 301 vasovagal syncope, 295 vegetable oil, 321 vein, 147 vertigo, 295 victims, 99 video, 36, 37, 39, 194, 289, 298, 306, 308 videos, 36, 37, 39, 194 Vietnam, 32, 62, 63 violence, 152 vision, 29 visual acuity, 294 vitamin D, 325 vitamins, 325 vocational rehabilitation, 103, 106, 113 vocational training, 85, 106 vomiting, 295, 323 vulnerability, 38, 191, 229, 262, 273 vulnerability to depression, 262

water supplies, 69 watershed, 45 weakness, 6, 12, 259, 321, 322 wealth, 128 web, xiii, 86, 154, 171, 275, 326 websites, 37, 268 Wechsler Adult Intelligence Scale (WAIS), 78 weight gain, 124, 130, 259 weight loss, 326 welfare, 61, 129 West Africa, 57 Western countries, 106 Western Europe, 95 white matter, 311 windows, 36, 181 wires, 326 witchcraft, 147, 316 withdrawal, 129, 211, 230, 231, 232, 238, 272, 297 witnesses, 289, 296 wood, 324 wool, 310 work activity, 7, 12 work environment, 105, 260, 283 worker rights, 106 workers, 33, 60, 64, 65, 69, 95, 99, 100, 101, 102, 105, 109, 260 Workforce Investment Act, 103, 104, 114 workplace, 50, 83, 99, 100, 102, 105, 106, 107, 113, 253, 260 World Health Organisation, 17, 18, 27, 56, 59, 124, 140, 144, 145, 162 worry, 50, 191, 264

Y yang, 324 yin, 324 young adults, 88, 189, 245, 308 young women, 124

Z

W Wales, xii, 156, 161 walking, 104, 303, 321

349

Zimbabwe, 155, 162