EPILEPSY

across the SPECTRUM

PROMOTING HEALTH AND UNDERSTANDING

Committee on the Public Health Dimensions of the Epilepsies

Board on Health Sciences Policy

Mary Jane England, Catharyn T. Liverman,
Andrea M. Schultz, and Larisa M. Strawbridge, Editors

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, NW • Washington, DC 20001

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.

This study was supported by Contract No. N01-OD-4-2139, T.O. #242, between the National Academy of Sciences and the National Institutes of Health (Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, and National Institute on Aging); Contract No. HHSP23337026T, T.O. #47, between the National Academy of Sciences and the Department of Health and Human Services (Administration on Developmental Disabilities, Center for Devices and Radiological Health and Center for Drug Evaluation and Research at the Food and Drug Administration, National Center for Chronic Disease Prevention and Health Promotion and National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, Office of the Assistant Secretary for Health, Office of the Assistant Secretary for Planning and Evaluation, and Office on Women’s Health); and with support from Vision 20-20 sponsors (American Epilepsy Society, Citizens United for Research in Epilepsy, Dravet. org, Epilepsy Foundation, Epilepsy Therapy Project, Finding A Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers, Preventing Teen Tragedy, Rasmussen’s Encephalitis Children’s Project, and Tuberous Sclerosis Alliance). Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

Library of Congress Cataloging-in-Publication Data

Institute of Medicine (U.S.). Committee on the Public Health Dimensions of the Epilepsies.

  Epilepsy across the spectrum : promoting health and understanding / Committee on the Public Health Dimensions of the Epilepsies, Board on Health Sciences Policy, Institute of Medicine of the National Academies ; Mary Jane England … [et al.], editors.

      p. ; cm.

  Includes bibliographical references.

  ISBN 978-0-309-25506-6 (hardcover) — ISBN 978-0-309-25507-3 (pdf)

  ISBN 978-0-309-25953-8 (paperback)

  ISBN 0-309-25509-0

  I. England, Mary Jane, 1938- II. Title.

  [DNLM: 1. Epilepsy—United States. 2. Health Education—methods—United States. 3. Health Policy—United States. 4. Quality of Health Care—United States. WL 385]

  362.196853—dc23

2012016603

“Knowing is not enough; we must apply.
Willing is not enough; we must do.”

—Goethe

INSTITITE OF MEDICINE
OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine

The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.

The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering.

The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council.

COMMITTEE ON THE PUBLIC HEALTH DIMENSIONS OF THE EPILEPSIES

MARY JANE ENGLAND(Chair), Boston University, Massachusetts

JOAN KESSNER AUSTIN, Indiana University School of Nursing, Indianapolis

VICKI BECK, Beck Communications, Carlsbad, California

CHARLES E. BEGLEY, University of Texas Health Science Center, Houston

MALACHY L. BISHOP, University of Kentucky, Lexington

LIONEL CARMANT, Université de Montréal, Canada

CAROLYN COCOTAS, F·E·G·S Health and Human Services System, New York

SANDRA CUSHNER-WEINSTEIN, Children’s National Medical Center, Washington, DC

RAMON DIAZ-ARRASTIA, Uniformed Services University of the Health Sciences, Rockville, Maryland

DAVID GRANT, University of California, Los Angeles

CHRISTIANNE N. HECK, University of Southern California, Los Angeles

DALE C. HESDORFFER, Columbia University, New York

GREGORY L. HOLMES, Dartmouth Medical School, Hanover, New Hampshire

PAUL E. JARRIS, Association of State and Territorial Health Officials, Arlington, Virginia

DILIP V. JESTE, University of California, San Diego

PATRICIA OSBORNE SHAFER, Beth Israel Deaconess Medical Center, Boston, Massachusetts

JOSEPH I. SIRVEN, Mayo Clinic, Scottsdale, Arizona

Study Staff

CATHARYN T LIVERMAN, Study Director

ANDREA M. SCHULTZ, Study Director

LARISA M. STRAWBRIDGE, Research Associate

JUDITH L. ESTEP, Program Associate

ANDREW M. POPE, Director, Board on Health Sciences Policy

Consultant

VICTORIA WEISFELD, Science Writer

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Reviewers

This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:

Donna M. Ferriero, University of California, San Francisco, Benioff Children’s Hospital

John R. Finnegan, University of Minnesota School of Public Health, Minneapolis

Robert Fisher, Stanford University Comprehensive Epilepsy Center, California

Robert Fraser, University of Washington, Seattle

Frank Gilliam, Geisinger Health System, Danvillle, Pennsylvania

Bruce Hermann, University of Wisconsin, Madison

Nathalie Jetté, Foothills Medical Centre, Calgary, Alberta, Canada

Lewis Kazis, Boston University, Massachusetts

Mary Macleish, Epilepsy Foundation of Arizona, Glendale

Angela Barron McBride, Indiana University School of Nursing, Indianapolis

Bernice Pescosolido, Indiana University, Bloomington

Mary Jo Pugh, University of Texas Health Science Center, San Antonio

Cary Sennett, IMPAQ International, LLC, Columbia, Maryland

Dennis Dee Spencer, Yale School of Medicine, New Haven, Connecticut

Edwin Trevathan, Saint Louis University School of Public Health, Missouri

Barbara Vickrey, University of California, Los Angeles

Janelle Wagner, Medical University of South Carolina, Charleston

Samuel Wiebe, Foothills Medical Centre, Calgary, Alberta, Canada

Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by Enriqueta C. Bond, President Emeritus at Burroughs Wellcome Fund, and Dan G. Blazer, Gibbons Professor of Psychiatry, Duke University Medical Center. Appointed by the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

Preface

Millions of lives in the United States are affected by epilepsy, yet this fourth most common neurological disorder is not as well understood as less prevalent conditions, such as Parkinson’s disease and multiple sclerosis. Epilepsy is a complex medical disorder—not all seizures are the result of epilepsy, and epilepsy-related seizures can vary widely in severity and in the parts of the brain affected. Further, epilepsy is more than the seizures: many people with epilepsy have other coexisting health conditions that can significantly affect their health and well-being. Health care and community services relevant to epilepsy care are often fragmented and uncoordinated and are not always easily accessible. Children and older adults represent the fastest-growing populations with newly diagnosed epilepsy.

Quality of life for people with epilepsy can be impacted to varying degrees; it may result in limits on the person’s ability to drive and on his or her employment and can have effects on social interactions and family dynamics. These challenges result in significant indirect costs for individuals, their families, and society that include lost productivity connected to unemployment, underemployment, and premature mortality. Throughout the centuries, misperceptions about epilepsy have developed and been perpetuated in popular culture, resulting in stigma and social isolation, which can affect health and further diminish quality of life. This history of discrimination and stigma has been difficult to reverse.

Despite these challenges, there are many ongoing efforts to improve the lives of people with epilepsy and their families; these efforts must continue and be strengthened so that, ultimately, all people with epilepsy have access

to the full range of coordinated health and community services they need. Access to current medications and other medical treatments, medical devices, and surgery allow many people with epilepsy to be seizure-free or to have fewer seizures. New treatment options are needed for those whose epilepsy does not respond to available treatments or who have unacceptable treatment side effects. Educating people with epilepsy, their families, health professionals, and the general public about epilepsy requires different types of information and varying levels of detail, depending on the audience. Educational resources and tools designed to promote optimal self-management need to be evaluated and disseminated widely in order to facilitate the active participation of people with epilepsy and their families in patient-centered epilepsy treatment and management. Further, more needs to be known about the extent of epilepsy and its impact, as well opportunities for prevention and early identification, so that programs can be focused most effectively and, in these times of limited resources, be more sustainable. Data from enhanced surveillance and research can guide planning and policy efforts to improve the lives of people with epilepsy.

This report emphasizes five key messages:

• Epilepsy is a common and a complex neurological disorder that affects health and quality of life. In the provision of coordinated health and human services, a whole-patient perspective is needed.
• Effective treatments are available for many types of epilepsy, but timely referrals and access to those treatments fall short. Better data from surveillance and research could improve epilepsy care and prevention.
• Many health professionals need to be better informed about epilepsy.
• Education efforts for people with epilepsy and their families need to be thorough and sensitive to health literacy and cultural considerations.
• The stigma associated with epilepsy has to be eliminated.

The committee’s work was greatly enhanced by the testimony and presentations provided by people with epilepsy, their family members and friends, epilepsy researchers, and health professionals. Their compelling insights into the challenges that epilepsy imposes spurred the committee toward developing practical, action-oriented recommendations to improve the lives of people with epilepsy. The committee thanks everyone who provided testimony for sharing their personal experiences and perspectives, and it also thanks the experts who shared their research and knowledge during the public workshops.

It was my great privilege to chair this Institute of Medicine committee

and to work with such dedicated committee members and staff who delved into the committee’s statement of task with energy, intellectual commitment, creative talent, and carefully considered discussion. They devoted countless hours to this work. We hope that this report will be both a foundation and a stepping stone to further the diligent efforts by the epilepsy community, government agencies, nonprofit organizations, researchers, and individuals with epilepsy and their families. People with epilepsy will need all of our efforts to provide appropriate and compassionate care and services in order to live fully and with optimal quality of life.

Mary Jane England, Chair

Committee on the Public Health

Dimensions of the Epilepsies

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Acknowledgments

This report was informed by the contributions of many individuals who provided expertise, personal insights and perspectives, and data. The Institute of Medicine (IOM) Committee on the Public Health Dimensions of the Epilepsies would like to express its sincere gratitude to everyone who made this report possible.

cies and nonprofit organizations came together with a vision for advancing the field of epilepsy and improving the lives of individuals with epilepsy by focusing this study on the public health dimensions of the disorder. The efforts of many individuals, including Frances Jensen, Howard Koh, and Story Landis, were instrumental in getting the study under way.

understanding of the complexity and variation in health professional education about the epilepsies.

Special appreciation goes to the dedicated IOM study staff members who supported and contributed to the committee’s work during the last 18 months. Cathy Liverman and Andrea Schultz co-directed the study; Lara Strawbridge provided invaluable research support; and Judy Estep skillfully managed all logistical and administrative aspects of the study. The committee is also grateful to Vicki Weisfeld of NEW Associates, LLC, for their assistance in editing the report and for their keen attention to detail; to Florence Poillon for copyediting the final version of the report; and to LeAnn Locher for her artistic talents in creating the cover and design elements throughout the report.

Finally, the committee would like to express its thanks to the IOM and National Academies staff members who worked behind the scenes to ensure a seamless study process and successful production and dissemination of this report: Clyde Behney, Daniel Bethea, Laura DeStefano, Jim Jensen, Rachel Marcus, Abbey Meltzer, Andy Pope, Donna Randall, Lauren Rugani, Christine Stencel, Lora Taylor, Vilija Teel, Lauren Tobias, Gary Walker, and Sarah Ziegenhorn.

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Contents

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Tables, Figures, and Boxes

TABLES

BOXES

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