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Improving Lives of People with Epilepsy

Author: National Academy of Sciences

Published: 2012-04-03 : (Rev. 2016-06-13)

Synopsis:

Main Digest

IOM report identifies public health actions for improving the lives of those with epilepsy.

A brain disorder in which a person has repeated seizures (convulsions) over time. Seizures are episodes of disturbed brain activity that cause changes in attention or behavior. There are different types of epilepsy and seizures. Epilepsy drugs are prescribed to control seizures, and rarely surgery is necessary if medications are ineffective.

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.

Mis-perceptions 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, 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.

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 national-academies.org or iom.edu

Committee on the Public Health Dimensions of the Epilepsies

Mary Jane England, M.D. (chair)
Visiting Professor of Health Policy and Management
Boston University
Boston

Joan K. Austin, Ph.D., R.N., FAAN
Distinguished Professor Emerita
School of Nursing
Indiana University
Indianapolis

Vicki Beck, M.S.
Communications Consultant
Beck Communications
Carlsbad, Calif.

Charles E. Begley, Ph.D.
Professor of Management and Policy Sciences, and
Co-Director
Center for Health Services Research
School of Public Health
University of Texas Health Science Center
Houston

Malachy L. Bishop, Ph.D., CRC
Professor of Rehabilitation Counseling
University of Kentucky
Lexington

Lionel Carmant, M.D.
Professor of Neurology
Department of Pediatrics
University of Montreal
Montreal

Carolyn Cocotas, R.T., M.P.A., CHC, CHPC
Senior Vice President of Quality and Corporate Compliance
FEGS 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.
Director
California Health Interview Survey
Center for Policy Research
University of California
Los Angeles

Christianne N. Heck, M.D., M.M.M.
Director
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.
Chair
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
Boston

Joseph I. Sirven, M.D.
Professor and Chair
Department of Neurology
Mayo Clinic College of Medicine
Scottsdale, Ariz.

STAFF

Cathy T. Liverman, M.L.S.
Study Co-Director

Andrea M. Schultz, M.P.H.
Study Co-Director

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