San Antonio – On December 6 representatives for government, professional and family organizations concerned with epilepsy announced their sponsorship of an independent national review of the public health dimensions of this common neurological disorder. Epilepsy comprises a broad constellation of seizure syndromes, collectively known as the epilepsies, which affect nearly 3 million Americans. Families with members affected by these syndromes, and the health care professionals and service providers who give specialized epilepsy care and support, are concerned that the prevalence and consequences of the disorder are inadequately recognized.
The national review of the burden of epilepsy is being conducted by the Institute of Medicine (IOM) at the request of 21 sponsoring organizations, including the U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation, the National Institutes of Health, and Vision 20/20, an informal coalition of non-government professional and lay organizations concerned with the disorder, including the Epilepsy Foundation. The IOM is now in the process of convening an ad hoc committee of individuals with a range of expertise in epilepsy and other relevant fields for its analysis, according to an announcement at a media briefing during the American Epilepsy Society’s annual meeting and scientific conference on December 6.
Speakers at the briefing were Story C. Landis, Ph.D., Director, National Institute for Neurological Diseases and Stroke (NINDS); Carmita Vaughan, CEO, Citizens United for Research in Epilepsy (CURE), who represented the Vision 20/20 group of epilepsy organizations; and Frances E. Jensen, M.D., a neuroscientist and professor of neurology at Children’s Hospital Boston and Harvard Medical School, who spoke on behalf of the American Epilepsy Society (AES), where she serves as its first vice president.
According to Dr. Jensen, “Traditional approaches to epilepsy do not fully take into account the broad range of seizure disorders or syndromes that vary in their onset, severity, progression, and impact on health and disability. The special needs of affected infants, children, adults and the elderly, as well as the special needs of people with disabilities and people with intractable seizures, are also poorly understood and inadequately addressed in the national response to epilepsy.”
The IOM committee has been asked to suggest priorities and propose strategies for dealing with the barriers and gaps in knowledge that diminish quality of life for people with epilepsy and their families. Epilepsy is one of the most common neurologic conditions in the United States, affecting at least 1 in 100 adults and 1 in 20 children. There are more than 40 types of epilepsy—referred to collectively as the epilepsies—that cause recurrent seizures and that can be responsible for brain damage; neurological, cognitive, or psychiatric impairment; and death. Advances in research are improving our understanding of the scope of epilepsy and its public health impact. However, current approaches do not fully take into account either the broad range of epilepsy disorders and their comorbidities or their consequences for health and quality of life.
The IOM is undertaking a new study that will consider the public health dimensions of the epilepsies in the United States—including health care and human services, health literacy, and education. The IOM will recommend priorities in these areas in order to better understand the public health impact of the epilepsies and to meet the needs of people with epilepsy and their caregivers. Specifically, the IOM will focus on the following questions:
• How can the public health burden of epilepsy for patients and families be more accurately assessed?
• What priorities for future population health studies could inform treatment and prevention?
• How can the access to health and human services and the quality of care for people with epilepsy be improved?
• How can the education and training of professionals who work with people with epilepsy be improved?
• How can the understanding of epilepsy in patients and the general public be improved to create supportive communities?
The IOM ad hoc committee on the public health dimensions of the epilepsies will meet in January to hear presentations by the sponsors and begin its work. For more information on the study, visit: http://iom.edu/Activities/Disease/Epilepsy.aspx.