National Academies Press: OpenBook
Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
×

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.

www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
×

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

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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
×

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

—Goethe

image

INSTITITE OF MEDICINE
OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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

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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

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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.

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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.

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-

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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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BOXES

1-1 Institute of Medicine Study on the Public Health Dimensions of the Epilepsies: Task and Sponsors

1-2 Seizure Types

2-1 Epilepsy Data Elements

2-2 Examples of Population Health Surveys

2-3 The Medical Expenditure Panel Survey

2-4 Examples of Existing Pregnancy Registries

2-5 National Cancer Registries

2-6 Example of a Collaborative Claims Database

2-7 All-Payer Claims Databases

2-8 The Department of Veterans Affairs’ Cardiovascular Assessment, Reporting and Tracking System

2-9 Examples of Electronic Health Record Data-Sharing Efforts

2-10 Examples of International Surveillance of the Epilepsies

4-1 Examples of Treatment Programs for Comorbidities

4-2 Examples of Practice Guidelines

4-3 Examples of Lessons Learned and Tools Developed from the Learning Collaboratives

4-4 Epilepsy Specialist Nurses

5-1 University of Massachusetts Psychiatry Residency Program

5-2 The J. Kiffin Penry Epilepsy Education Programs

5-3 Selected Examples of Organizations That Offer Epilepsy-Related Continuing Education Opportunities

5-4 Programs for Educating First Responder and Emergency Medical Services Personnel About Seizures and the Epilepsies

5-5 Priority Epilepsy Educational Areas for Health Professionals

6-1 Costs of Epilepsy

6-2 Educational Plans for Students with Disabilities

6-3 Key Employment Legislation

6-4 Discussion Points for Educating Patients About Driving

7-1 Examples of Broad Knowledge Areas for People with Epilepsy and Their Families

7-2 Examples of Specific Knowledge Needs for Women and Men

7-3 Examples of Specific Educational Needs of Parents and Other Caregivers

7-4 Examples of Specific Educational Needs of People with Seizure-Like Events

Suggested Citation:"Front Matter." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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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
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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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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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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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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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Although epilepsy is one of the nation's most common neurological disorders, public understanding of it is limited. Many people do not know the causes of epilepsy or what they should do if they see someone having a seizure. Epilepsy is a complex spectrum of disorders that affects an estimated 2.2 million Americans in a variety of ways, and is characterized by unpredictable seizures that differ in type, cause, and severity. Yet living with epilepsy is about much more than just seizures; the disorder is often defined in practical terms, such as challenges in school, uncertainties about social situations and employment, limitations on driving, and questions about independent living.

The Institute of Medicine was asked to examine the public health dimensions of the epilepsies, focusing on public health surveillance and data collection; population and public health research; health policy, health care, and human services; and education for people with the disorder and their families, health care providers, and the public. In Epilepsy Across the Spectrum, the IOM makes recommendations ranging from the expansion of collaborative epilepsy surveillance efforts, to the coordination of public awareness efforts, to the engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved care and services. Taking action across multiple dimensions will improve the lives of people with epilepsy and their families. The realistic, feasible, and action-oriented recommendations in this report can help enable short- and long-term improvements for people with epilepsy. For all epilepsy organizations and advocates, local, state, and federal agencies, researchers, health care professionals, people with epilepsy, as well as the public, Epilepsy Across the Spectrum is an essential resource.

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