A new report from the Institute of Medicine highlights numerous gaps in the knowledge and management of epilepsy, and recommends actions for promoting better understanding of the disorder and improving the lives of people who live with it.
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 the disorder affects people of all ethnicities and socioeconomic backgrounds. 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, according to the committee that wrote the report.
Effective treatments for epilepsy are available, but access to treatment and timely referrals to specialized care are often lacking, the committee found. Reaching rural and underserved populations, as well as providing state-of-the art care for people with persistent seizures, is especially important.
The reports recommendations for expanding access to patient-centered healthcare 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 healthcare, the committee wrote.
Some causes of epilepsy, such as traumatic brain injury, infection and stroke, are preventable, the committee noted. 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.
People with epilepsy need additional education and skills to optimally manage their disorder, the authors wrote. Consistent delivery of accurate, clearly communicated health information from sources including healthcare professionals and epilepsy organizations can better prepare those with epilepsy and their families to cope with the disorder and its consequences. Accurate, current data on the extent and consequences of epilepsy and its associated health conditions especially are 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 stressed 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, necessitating a focus on raising public awareness and knowledge, the committee wrote. 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.
To read the report online, visit http://bit.ly/HzB6eu.