An estimated 2.2 million people in the United States live with epilepsy, a complex brain disorder characterized by sudden and often unpredictable seizures, but a new report from the Institute of Medicine (IOM) highlights numerous gaps in the knowledge and management of epilepsy.
The report recommended actions for improving the lives of those with epilepsy and their families and promoting better understanding of the disorder.
USC epilepsy authority Christi Heck, associate professor of clinical neurology and director of the Adult Comprehensive Epilepsy program at the Keck School of Medicine of USC, was one of 17 members of the IOM’s Committee on the Public Health Dimensions of Epilepsy, which prepared the report.
“It’s a huge honor to be part of this effort,” Heck said. “There is still a lot of stigma [toward people with this condition] and difficulty with access to health care. Many with epilepsy are disabled. Epilepsy is a huge spectrum of diseases that makes it difficult to live with. There is a high rate of unexpected death and a lot of fear. Getting epilepsy into the public eye is a big milestone for the disorder and for the epilepsy community.”
According to the IOM, the highest rate of onset occurs in children and older adults, and it 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, Heck said.
“Our task was not to examine research endeavors but to address public health issues, such as access to care, co-morbidities and quality-of-life issues,” she explained.
Effective treatments for epilepsy are available but access to treatment and timely referrals to specialized care often are lacking, the report’s committee of experts found. Reaching rural and underserved populations, as well as providing state-of-the art care for people with persistent seizures, particularly is crucial.
The report’s recommendations for expanding access to patient-centered health care included 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 health professionals who care for those with epilepsy need better knowledge and skills to provide health care of the highest quality.
Some causes of epilepsy, including traumatic brain injury, infection and stroke, are preventable. According to the report, 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 also need additional education and skills to optimally manage their disorder, the report found. 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, according to the report.
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 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 and a focus on raising public awareness and knowledge is needed, the report added. Educating community members on how to manage seizures could help improve public understanding of epilepsy. The report suggested 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 IOM’s Committee on the Public Health Dimensions of Epilepsy was chaired by Mary Jane England, visiting professor of health policy and management at Boston University.