March 30, 2012




IOM Report Identifies Public Health Actions for Improving the Lives of Those With Epilepsy


WASHINGTON — An estimated 2.2 million people in the United States live with epilepsy, a complex brain disorder characterized by sudden and often unpredictable seizures.  The highest rate of onset occurs in children and older adults, and it affects people of all ethnicities and socio-economic backgrounds, yet this common disorder is widely misunderstood.  Epilepsy refers to a spectrum of disorders with seizures that vary in type, cause, severity, and frequency.  Many people do not know the causes of epilepsy or what measures to take if they witness a seizure.  A new report from the Institute of Medicine highlights numerous gaps in the knowledge and management of epilepsy and recommends actions for improving the lives of those with epilepsy and their families and promoting better understanding of the disorder.


Effective treatments for epilepsy are available but access to treatment and timely referrals to specialized care are often lacking, the report's expert committee found.  Reaching rural and underserved populations, as well as providing state-of-the art care for people with persistent seizures, is particularly crucial.  The report’s recommendations for expanding access to patient-centered health care include early identification and treatment of epilepsy and associated health conditions, implementing measures that assess quality of care, and establishing accreditation criteria and processes for specialized epilepsy centers.  In addition, the wide variety of health professionals who care for those with epilepsy need improved knowledge and skills to provide the highest quality health care.


Some causes of epilepsy, such as traumatic brain injury, infection, and stroke, are preventable.  Prevention efforts should continue for these established risk factors, as well as for recurring seizures in people with epilepsy and depression, and for epilepsy-related causes of death, the report says.


People with epilepsy need additional education and skills to optimally manage their disorder.  Consistent delivery of accurate, clearly communicated health information from sources that include health care professionals and epilepsy organizations can better prepare those with epilepsy and their families to cope with the disorder and its consequences, the report says.  Accurate, current data on the extent and consequences of epilepsy and its associated health conditions are especially needed to inform policymakers and identify opportunities for reducing the burden of epilepsy.


Living with epilepsy can affect employment, driving ability, and many other aspects of quality of life.  The report stresses the importance of improved access to a range of community services, including vocational, educational, transportation, transitional care, and independent living assistance as well as support groups.  The committee urged collaboration among federal agencies, state health departments, and relevant epilepsy organizations to improve and integrate these services and programs, particularly at state and local levels.


Misperceptions about epilepsy persist and a focus on raising public awareness and knowledge is needed, the report adds.  Educating community members such as teachers, employers, and others on how to manage seizures could help improve public understanding of epilepsy.  The report suggests several strategies for stakeholders to improve public knowledge of the disorder, including forming partnerships with the media, establishing advisory councils, and engaging people with epilepsy and their families to serve as advocates and educators within their communities.


The study was sponsored by U.S. Department of Health and Human Services, Administration on Developmental Disabilities, Center for Devices and Radiological Health, Center for Drug Evaluation and Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Center for Chronic Disease Prevention and Health Promotion, National Center on Birth Defects and Developmental Disabilities, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, Office of the Assistant Secretary for Health, Office on Women’s Health, and Office of the Assistant Secretary for Planning and Evaluation; and by members of the Vision 20-20 collaborative -- American Epilepsy Society, Citizens United for Research in Epilepsy,, 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. 


Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides objective, evidence-based advice to policymakers, health professionals, the private sector, and the public.  The Institute of Medicine, National Academy of Sciences, National Academy of Engineering, and National Research Council together make up the independent, nonprofit National Academies.  For more information, visit or    A committee roster follows.



Lauren Rugani, Media Relations Officer

Luwam Yeibio, Media Relations Assistant

Office of News and Public Information

202-334-2138; e-mail


Additional resources:

Report in Brief

Project Website
Webcast Video


Pre-publication copies of Epilepsy Across the Spectrum: Promoting Health and Understanding are available from the National Academies Press; tel. 202-334-3313 or 1-800-624-6242 or on the Internet at  Reporters may obtain a copy from the Office of News and Public Information (contacts listed above).


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Board on Health Sciences Policy


Committee on the Public Health Dimensions of the Epilepsies


Mary Jane England, M.D. (chair)

Visiting Professor of Health Policy and Management

Boston University



Joan K. Austin, Ph.D., R.N., FAAN

Distinguished Professor Emerita

School of Nursing

Indiana University



Vicki Beck, M.S.

Communications Consultant

Beck Communications

Carlsbad, Calif.


Charles E. Begley, Ph.D.

Professor of Management and Policy Sciences, and


Center for Health Services Research

School of Public Health

University of Texas Health Science Center



Malachy L. Bishop, Ph.D., CRC

Professor of Rehabilitation Counseling

University of Kentucky



Lionel Carmant, M.D.

Professor of Neurology

Department of Pediatrics

University of Montreal



Carolyn Cocotas, R.T., M.P.A., CHC, CHPC

Senior Vice President of Quality and Corporate Compliance

E·G·S Health and Human Services System

New York City


Sandra Cushner-Weinstein, P.T., LICSW, LCSW-C

Director of Children's Services and Camps

Center of Neuroscience and Behavioral Medicine

Children's National Medical Center

Washington, D.C.


Ramon Diaz-Arrastia, M.D., Ph.D.

Director of Clinical Research

Center for Neuroscience and Regenerative Medicine, and

Professor of Neurology

Uniformed Services University of the Health Sciences

Bethesda, Md.


David Grant, Ph.D.


California Health Interview Survey

Center for Policy Research

University of California

Los Angeles


Christianne N. Heck, M.D., M.M.M.


Adult Comprehensive Epilepsy Program

University of Southern California

Los Angeles


Dale C. Hesdorffer, Ph.D., M.P.H.

Associate Professor of Clinical Epidemiology

Mailman School of Public Health

Columbia University

New York City


Gregory L. Holmes, M.D.


Department of Neurology, and

Professor of Neurology and Pediatrics

Neuroscience Center

Dartmouth Medical School

Hanover, N.H.


Paul E. Jarris, M.D., M.B.A.

Executive Director

Association of State and Territorial Health Officials

Arlington, Va.


Dilip V. Jeste, M.D.

Distinguished Professor of Psychiatry and Neurosciences

University of California

San Diego


Patricia O. Shafer, R.N., M.N.

Epilepsy Clinical Nurse Specialist

Comprehensive Epilepsy Center

Beth Israel Deaconess Medical Center



Joseph I. Sirven, M.D.

Professor and Chair

Department of Neurology

Mayo Clinic College of Medicine

Scottsdale, Ariz.




Cathy T. Liverman, M.L.S.

Study Co-Director


Andrea M. Schultz, M.P.H.

Study Co-Director