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
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)
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]
Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu.
Copyright 2012 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
Suggested citation: IOM (Institute of Medicine). 2012. Epilepsy across the spectrum: Promoting health and understanding. Washington, DC: The National Academies Press.
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
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
VICTORIA WEISFELD, Science Writer
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.
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
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.
First, the committee would like to thank the sponsors of this study. Funds were provided through several divisions of the U.S. Department of Health and Human Services (HHS): Administration on Developmental Disabilities, Center for Devices and Radiological Health (Food and Drug Administration [FDA]), Center for Drug Evaluation and Research (FDA), Eunice Kennedy Shriver National Institute of Child Health and Human Development (National Institutes of Health [NIH]), National Center for Chronic Disease Prevention and Health Promotion (Centers for Disease Control and Prevention [CDC]), National Center on Birth Defects and Developmental Disabilities (CDC), National Institute of Mental Health (NIH), National Institute of Neurological Disorders and Stroke (NIH), National Institute on Aging (NIH), Office of the Assistant Secretary for Health (HHS), Office of the Assistant Secretary for Planning and Evaluation (HHS), and Office on Women’s Health (HHS); and by members of the Vision 20-20 collaborative: 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 (NAEC), Preventing Teen Tragedy, Rasmussen’s Encephalitis Children’s Project, and Tuberous Sclerosis Alliance. These 24 federal agen-
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.
Over the course of the study, the committee conducted two public workshops during which more than 80 researchers, experts, health professionals, and individuals with epilepsy and their families and friends provided presentations and testimony (Appendix A). The committee also heard from numerous individuals throughout the study who shared their personal stories via e-mail. The committee is especially grateful to the individuals who provided compelling and candid information about their own personal experiences with epilepsy, including their concerns, burdens, joys, and challenges. Excerpts from testimony the committee received is interspersed throughout the chapters of this report.
The committee is also appreciative of the background information and data that individuals, sponsors, and other epilepsy-related organizations generously provided to inform the committee’s work, including a wealth of information about research, programs, campaigns, website statistics, and the history of the epilepsy movement.
The committee would like to recognize a number of individuals who graciously devoted time and energy to gathering and summarizing the data on people with epilepsy and their health services use that appear in Appendixes B and C of this report. Contributors included David R. Nerenz, Gregory L. Barkley, Marianna Spanaki-Varelas, Aida Li, and their colleagues at Henry Ford Health System; Matthew A. R. Eccher, Joshua N. Liberman, Amanda C. Bengier, Frank G. Gilliam, and their colleagues in the Geisinger Health System; Mary Jo Pugh, Megan Amuan, and their colleagues at the Veterans Health Administration; Anbesaw W. Selassie, Chris Finney, Sandra Kelly, and their colleagues from the South Carolina Epilepsy Surveillance System; and Robert J. Gumnit, David M. Labiner, Nathan B. Fountain, Susan T. Herman, Ellen Riker, and the epilepsy centers that participated in the 2011 NAEC Center Designation Survey and the 2011 Supplemental Survey for the IOM, both conducted by the NAEC.
The committee is also grateful to the more than 50 health professional boards and associations that took the time to answer the committee’s questions and provide information on certification and licensure requirements, curricular content, and continuing education opportunities and requirements for the wide range of health professionals that work daily to provide people with epilepsy and their families with high-quality, patient-centered health care, community, and educational services. While these boards and associations are too numerous to list here, many of them are listed Appendix D, and the information they provided was vital to the committee’s
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.
Tables, Figures, and Boxes
|AAN||American Academy of Neurology|
|AANN||American Association of Neuroscience Nurses|
|ABLE||Attitudes and Beliefs about Living with Epilepsy|
|ABNN||American Board of Neuroscience Nursing|
|ABPN||American Board of Psychiatry and Neurology|
|ACA||Patient Protection and Affordable Care Act|
|ACR||American College of Radiology|
|ACS||American College of Surgeons|
|ADA||Americans with Disabilities Act|
|ADD||attention deficit disorder|
|ADDM||Autism and Developmental Disabilities Monitoring|
|ADHD||attention deficit hyperactivity disorder|
|AES||American Epilepsy Society|
|AHRQ||Agency for Healthcare Research and Quality|
|AIDS||acquired immune deficiency syndrome|
|APCD||all-payer claims database|
|ASMP||Arthritis Self-Management Program|
|BRFSS||Behavioral Risk Factor Surveillance System|
|CART||Cardiovascular Assessment, Reporting and Tracking|
|CDC||Centers for Disease Control and Prevention|
|CDE||Common Data Element|
|CDIS||Clinical Decision Intelligence System|
|CDSMP||Chronic Disease Self-Management Program|
|CEO||chief executive officer|
|CFF||Cystic Fibrosis Foundation|
|CHIS||California Health Interview Survey|
|CME||continuing medical education|
|CMS||Centers for Medicare and Medicaid Services|
|CNS||central nervous system|
|COPE||Coping Openly and Personally with Epilepsy|
|CPT||Current Procedural Terminology|
|CURE||Citizens United for Research in Epilepsy|
|DHEC||Department of Health and Environmental Control|
|DOD||Department of Defense|
|DSM-IV||Diagnostic and Statistical Manual of Mental Disorders,|
|DSME||diabetes self-management education|
|DUI||driving under the influence|
|ECOE||Epilepsy Center of Excellence|
|EEG||electroencephalogram, electroencephalograph, electroencephalography|
|EFNS||European Federation of Neurological Societies|
|EHR||electronic health record|
|EMR||electronic medical record|
|EMS||emergency medical services|
|EMT||emergency medical technician|
|EMU||epilepsy monitoring unit|
|ETP||Epilepsy Therapy Project|
|EURAP||International Registry of Antiepileptic Drugs and Pregnancy|
|EUROCAT||European Surveillance of Congenital Anomalies|
|FDA||Food and Drug Administration|
|GHS||Geisinger Health System|
|HAP||Health Alliance Plan|
|HEDIS||Healthcare Effectiveness Data and Information Set|
|HFH||Henry Ford Hospital|
|HFMG||Henry Ford Medical Group|
|HFWBH||Henry Ford West Bloomfield Hospital|
|HHS||U.S. Department of Health and Human Services|
|HIPAA||Health Insurance Portability and Accountability Act|
|HIV||human immunodeficiency virus|
|HMO||health maintenance organization|
|HMORN||HMO Research Network|
|HON||Health On the Net|
|HONcode||HON Code of Conduct|
|HRSA||Health Resources and Services Administration|
|IAN||Interactive Autism Network|
|ICD-9||International Classification of Diseases, Ninth Revision|
|ICD-10||International Classification of Diseases, Tenth Revision|
|ICD-CM||International Classification of Diseases, Clinical|
|IDEA||Individuals with Disabilities Education Act|
|IEP||individualized education program|
|ILAE||International League Against Epilepsy|
|IOM||Institute of Medicine|
|IRB||institutional review board|
|LPN||licensed practical nurse|
|LVN||licensed vocational nurse|
|MEPS||Medical Expenditure Panel Survey|
|MEW||Managing Epilepsy Well|
|MNS||mental health, neurological, and substance-use|
|MOSES||Modular Service Package Epilepsy|
|MRI||magnetic resonance imaging|
|MUSC||Medical University of South Carolina|
|NAACCR||North American Association of Central Cancer Registries|
|NAEC||National Association of Epilepsy Centers|
|NAMI||National Alliance on Mental Illness|
|NASN||National Association of School Nurses|
|NCCDPHP||National Center for Chronic Disease Prevention and Health Promotion|
|NCQA||National Committee for Quality Assurance|
|NCI||National Cancer Institute|
|NETT||Neurological Emergencies Treatment Trials|
|NHIS||National Health Interview Survey|
|NIH||National Institutes of Health|
|NIMH||National Institute of Mental Health|
|NINDS||National Institute of Neurological Disorders and Stroke|
|NIS||Nationwide Inpatient Sample|
|NOS||not otherwise specified|
|NPCR||National Program of Cancer Registries|
|NPSNC||National Population Health Study of Neurological|
|NQF||National Quality Forum|
|OEF||Operation Enduring Freedom|
|OIF||Operation Iraqi Freedom|
|ORS||Office of Research and Statistics|
|PAHO||Pan American Health Organization|
|PCAST||President′s Council of Advisors on Science and Technology|
|PCPI||Physician Consortium for Performance Improvement|
|PEARLS||Program to Encourage Active, Rewarding Lives for Seniors|
|PET||positron emission tomography|
|PTSD||posttraumatic stress disorder|
|QOLIE||quality of life in epilepsy|
|QUIET||QUality Indicators in Epilepsy Treatment|
|RAMPART||Rapid Anticonvulsant Medications Prior to Arrival Trial|
|RHIO||regional health information organization|
|SCESS||South Carolina Epilepsy Surveillance System|
|SEE||Seizures and Epilepsy Education|
|SEER||Surveillance, Epidemiology, and End Results|
|SHP||State Health Plan|
|SIRE||Stockholm Incidence Registry of Epilepsy|
|SPECT||single positron emission tomography|
|SSN||Social Security number|
|SUDEP||sudden unexpected death in epilepsy|
|TAPS||Training Applicants for Placement Success|
|TBI||traumatic brain injury|
|UCSD||University of California, San Diego|
|UPLIFT||Using Practice and Learning to Increase Favorable Thoughts|
|USC||University of Southern California|
|VA||Department of Veterans Affairs|
|VDW||Virtual Data Warehouse (HMORN)|
|VHA||Veterans Health Administration|
|VIREPA||Virtual Epilepsy Academy (ILAE)|
|VNS||vagus nerve stimulation|
|WebEase||Web Epilepsy Access, Support, and Education|
|YRBSS||Youth Risk Behavior Surveillance System|