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

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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

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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 In- stitute 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 Na- tional 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 orga- nizations 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] 362.196853—dc23 2012016603 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.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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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 Acad- emy 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 en- gineers. 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 engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent 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 Insti- tute 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 Sci- ences 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 Coun- cil 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. www.national-academies.org

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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 v

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Reviewers T his 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 confiden- tial 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 vii

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viii REVIEWERS 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, Presi- dent 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.

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Preface M illions of lives in the United States are affected by epilepsy, yet this fourth most common neurological disorder is not as well under- stood 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 individu- als, 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 per- petuated in popular culture, resulting in stigma and social isolation, which can affect health and further diminish quality of life. This history of dis- crimination 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 ac- ix

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x PREFACE cess 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. Edu- cational 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 sustain- able. 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 pro- vided 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

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xi PREFACE 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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Tables, Figures, and Boxes TABLES 1-1 Prevalence and Incidence of Common Neurological Diseases and Disorders, 25 1-2 Global Burden of Mental Health, Neurological, and Substance-Use (MNS) Disorders, 28 1-3 Examples of Epilepsy Syndromes with Differing Severities, 35 3-1 Comorbid Conditions Associated with Epilepsy, 124 4-1 Diagnostic Studies Used in Evaluating and Treating People with Epilepsy, 165 4-2 Diagnostic and Treatment Considerations for Specific Populations, 167 4-3 Adults with a History of Epilepsy, Behavioral Risk Factor Surveillance System, 2005, 168 4-4 Direct Costs of Epilepsy, 1995 Dollars, 210 6-1 Spectrum of Potential Epilepsy-Related Needs and Community Services, 271 6-2 Comparison of Adults With and Without a History of Epilepsy, 277 6-3 Sporting and Recreational Activities Classified According to a Possible Risk for the Individual with Epilepsy, 292 xxi

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xxii TABLES, FIGURES, AND BOXES 7-1 Areas of Self-Management Education for Epilepsy, 358 D-1 Health Professionals Who Care for People with Epilepsy: Possible Roles and Relevant Boards and Organizations, 517 FIGURES 1-1a Incidence of epilepsy by age—composite of 12 studies in developed countries, 1988-2005, 26 1-1b Prevalence of epilepsy by age—composite of selected U.S. studies, 1978-2005, 26 1-2 Seizures and seizure-like events, 31 4-1 Seizure medications, 169 4-2 Model of access to health care services for people with epilepsy, 195 4-3 Treatment pathway for individuals with epilepsy, 197 4-4 National Association of Epilepsy Centers: Locations of the centers, 204 4-5 Epilepsy care model, 213 6-1 Health-related quality of life in adults with epilepsy, 276 6-2 Factors integral to quality of life for people with epilepsy, 309 7-1 Topics discussed and percent of visit spent on each, 342 7-2 Linking seizure frequency and comorbidity severity to self- management education and community resources and services, 369 7-3 Education for people with epilepsy and their families to promote optimal outcomes, 370 8-1 Calls to the Centers for Disease Control and Prevention’s National Sexually Transmitted Diseases and AIDS Hotline, January- December 2001, 394 B-1 Systems involved in epilepsy and seizure disorder surveillance in South Carolina, 492 B-2 Decision algorithm for individuals coded with a seizure not otherwise specified (780.39), 498

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xxiii TABLES, FIGURES, AND BOXES BOXES 1-1 Institute of Medicine Study on the Public Health Dimensions of the Epilepsies: Task and Sponsors, 22 1-2 Seizure Types, 34 2-1 Epilepsy Data Elements, 53 2-2 Examples of Population Health Surveys, 64 2-3 The Medical Expenditure Panel Survey, 67 2-4 Examples of Existing Pregnancy Registries, 70 2-5 National Cancer Registries, 73 2-6 Example of a Collaborative Claims Database, 78 2-7 All-Payer Claims Databases, 78 2-8 The Department of Veterans Affairs’ Cardiovascular Assessment, Reporting and Tracking System, 85 2-9 Examples of Electronic Health Record Data-Sharing Efforts, 85 2-10 Examples of International Surveillance of the Epilepsies, 92 4-1 Examples of Treatment Programs for Comorbidities, 180 4-2 Examples of Practice Guidelines, 182 4-3 Examples of Lessons Learned and Tools Developed from the Learning Collaboratives, 200 4-4 Epilepsy Specialist Nurses, 203 5-1 University of Massachusetts Psychiatry Residency Program, 249 5-2 The J. Kiffin Penry Epilepsy Education Programs, 250 5-3 Selected Examples of Organizations That Offer Epilepsy-Related Continuing Education Opportunities, 251 5-4 Programs for Educating First Responder and Emergency Medical Services Personnel About Seizures and the Epilepsies, 256 5-5 Priority Epilepsy Educational Areas for Health Professionals, 262 6-1 Costs of Epilepsy, 273 6-2 Educational Plans for Students with Disabilities, 288 6-3 Key Employment Legislation, 299 6-4 Discussion Points for Educating Patients About Driving, 304 7-1 Examples of Broad Knowledge Areas for People with Epilepsy and Their Families, 334 7-2 Examples of Specific Knowledge Needs for Women and Men, 337 7-3 Examples of Specific Educational Needs of Parents and Other Caregivers, 339 7-4 Examples of Specific Educational Needs of People with Seizure-Like Events, 340

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xxiv TABLES, FIGURES, AND BOXES 7-5 Examples of Critical Junctures for Patient and Family Education, 344 7-6 Examples of Web Resources Available for Information About the Epilepsies, 349 7-7 An Educational Model to Promote Self-Management in Children, 359 8-1 Examples of Survey Items from the Attitudes and Beliefs About Living with Epilepsy Instrument, 388 9-1 Research Priorities for Improving Surveillance and Prevention, 427 9-2 Research Priorities for Improving Health Care, 431 9-3 Research Priorities for Improving Health Professional Education, 433 9-4 Research Priorities for Improving Quality of Life and Community Resources, 436 9-5 Research Priorities for Improving Patient and Family Education, 438 9-6 Research Priorities for Improving Public Awareness and Knowledge, 440

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Acronyms 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 xxv

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xxvi ACRONYMS CE continuing education CEO chief executive officer CFF Cystic Fibrosis Foundation CHIS California Health Interview Survey CI confidence interval CME continuing medical education CMS Centers for Medicare and Medicaid Services CNS central nervous system COPE Coping Openly and Personally with Epilepsy CPR cardiopulmonary resuscitation CPT Current Procedural Terminology CT computerized tomography CURE Citizens United for Research in Epilepsy DALY disability-adjusted life-year DHEC Department of Health and Environmental Control DOD Department of Defense DSM-IV Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition DSME diabetes self-management education DUI driving under the influence ECOE Epilepsy Center of Excellence ED emergency department 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 END electroneurodiagnostic ETP Epilepsy Therapy Project EURAP International Registry of Antiepileptic Drugs and Pregnancy EUROCAT European Surveillance of Congenital Anomalies FDA Food and Drug Administration FY fiscal year GHS Geisinger Health System

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xxvii ACRONYMS 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 Modification IDEA Individuals with Disabilities Education Act IEP individualized education program ILAE International League Against Epilepsy IOM Institute of Medicine IRB institutional review board LGS Lennox-Gastaut syndrome LPN licensed practical nurse LVN licensed vocational nurse MEG magnetoencephalography 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

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xxviii ACRONYMS 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 Conditions NQF National Quality Forum OEF Operation Enduring Freedom OIF Operation Iraqi Freedom OPD outpatient department 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 SD standard deviation SE status epilepticus SEE Seizures and Epilepsy Education SEER Surveillance, Epidemiology, and End Results SES socioeconomic status 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

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xxix ACRONYMS TAPS Training Applicants for Placement Success TBI traumatic brain injury UB uniform billing UCSD University of California, San Diego UID unique identifier UPLIFT Using Practice and Learning to Increase Favorable Thoughts USC University of Southern California VA Department of Veterans Affairs VDW Virtual Data Warehouse (HMORN) vEEG video-EEG 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

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