A new report released by the Institute of Medicine offers a unified public health plan for the epilepsies that focuses on public health surveillance and data collection, population and public health research, health policy and human services, and education.
Epilepsy represents “a complicated spectrum … it impacts children but it also is growing very rapidly in senior citizens … we have solutions and we need to come together as public and private communities to work with people with epilepsy, their families and their communities to make this report a reality,” study chair Dr. Mary Jane England said at a press event.
The report, “Epilepsy Across the Spectrum: Promoting Health and Understanding,” was released March 30.
“Our study sponsors are probably the most exciting part. The public and private sectors came together to ask the IOM [Institute of Medicine] to do this,” Dr. England said. In all, 24 federal agencies and nonprofit organizations asked the IOM to examine the public health dimensions of the epilepsies. The study was sponsored by the U.S. Department of Health and Human Services and members of the Vision 20-20 collaborative, including the American Epilepsy Society (AES), Citizens United for Research in Epilepsy, the Epilepsy Foundation, and others.
“The focus that we’ve taken the most is that epilepsy is a spectrum of disorders; it’s not just one thing. There are many different types of seizures. There are many causes of seizures. So there are many syndromes and types of epilepsy,” said Dr. England, who is also visiting professor of health policy and management at Boston University.
The study committee identified several cross-cutting themes during the development of this report: epilepsy is a common and complex neurologic disorder that often affects quality of life, a whole-patient perspective is needed, effective treatments are available but access falls far short, data are needed to improve epilepsy knowledge and care and to inform policy, and there is a need to strengthen health professionals’ education, as well as bolster education efforts for people with epilepsy and their families. Lastly, though equally important, the committee cited the need to eliminate the stigma associated with epilepsy.
In the resulting report, the committee highlighted gaps in the knowledge and management of epilepsy, and made 13 recommendations:
• Validation and implementation of standard definitions and criteria for epilepsy case ascertainment, health care and community services use and costs, and quality measurement.
• Continuation and expansion of collaborative surveillance efforts.
• Development and evaluation of prevention efforts for epilepsy and its consequences.
• Improvement in the early identification of epilepsy and its comorbid health conditions.
• Development and implementation of a national quality measurement and improvement strategy for epilepsy care.
• Establishment of epilepsy center accreditation and an Epilepsy Care Network.
• Improvement in health professionals’ education about the epilepsies.
• Improvement in the delivery and coordination of community services.
• Improvement in and expansion of educational opportunities for patients and families.
• Provision of information to media to improve awareness and eliminate stigma.
• Coordination of public awareness efforts.
• Continuation and expansion of Vision 20-20 working groups and collaborative partnerships.
• Engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved epilepsy care and services.
The third recommendation focusing on developing and evaluating prevention efforts for epilepsy and its consequences – is of particular interest to both neurologic researchers and clinicians. The committee suggested that the Centers for Disease Control and Prevention partner with other stakeholders to develop and evaluate prevention efforts that focus on: preventing neurocysticercosis in high-risk populations; continuing prevention efforts for established risk factors of epilepsy (for example, traumatic brain injury, stroke, brain infections such as meningitis); preventing continued seizures in people with epilepsy and depression; reducing felt stigma; and preventing epilepsy-related causes of death, including accidents and injuries and suicide.
The fourth recommendation emphasizing the improvement of early identification of epilepsy and its comorbid health conditions also is relevant for clinicians. The committee recommends that the AES and American Academy of Neurology lead a collaborative effort with the wide range of relevant federal agencies and professional organizations to develop and validate screening tests for early identification of epilepsy in at-risk populations, establish and disseminate a standard screening protocol for comorbidities with currently approved screening tests, and establish and disseminate a screening tool for early identification of patients with persistent seizures to lead to earlier referrals to an epileptologist.