http://www.iom.edu/Reports/2012/Epilepsy-Across-the-Spectrum/Report-release.aspxDate: March 30, 2012
FOR IMMEDIATE RELEASE
IOM Report Identifies Public Health Actions for Improving the Lives of Those With Epilepsy
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, 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
Established in 1970 under the charter of the National Academy of Sciences, the
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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 http://www.nap.edu. 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
Visiting Professor of Health Policy and Management
Joan K. Austin, Ph.D., R.N., FAAN
Distinguished Professor Emerita
Vicki Beck, M.S.
Charles E. Begley, Ph.D.
Professor of Management and Policy Sciences, and
Center for Health Services Research
Malachy L. Bishop, Ph.D., CRC
Professor of Rehabilitation Counseling
Lionel Carmant, M.D.
Professor of Neurology
Department of Pediatrics
Carolyn Cocotas, R.T., M.P.A., CHC, CHPC
Senior Vice President of Quality and Corporate Compliance
F·E·G·S Health and Human Services System
Sandra Cushner-Weinstein, P.T., LICSW, LCSW-C
Director of Children's Services and Camps
Ramon Diaz-Arrastia, M.D., Ph.D.
Director of Clinical Research
Center for Neuroscience and Regenerative Medicine, and
Professor of Neurology
David Grant, Ph.D.
Center for Policy Research
Christianne N. Heck, M.D., M.M.M.
Adult Comprehensive Epilepsy Program
Dale C. Hesdorffer, Ph.D., M.P.H.
Associate Professor of Clinical Epidemiology
Gregory L. Holmes, M.D.
Department of Neurology, and
Professor of Neurology and Pediatrics
Paul E. Jarris, M.D., M.B.A.
Association of State and Territorial Health Officials
Dilip V. Jeste, M.D.
Distinguished Professor of Psychiatry and Neurosciences
Patricia O. Shafer, R.N., M.N.
Epilepsy Clinical Nurse Specialist
Joseph I. Sirven, M.D.
Professor and Chair
Department of Neurology
Cathy T. Liverman, M.L.S.
Andrea M. Schultz, M.P.H.