In March of this year, the Institute of Medicine (IOM) released a report regarding the "Spectrum of Epilepsy."
The report tells us that 1 in 26 people will develop epilepsy over a lifetime. (1 in 100 have it at any given moment. The discrepancy in these numbers can be explained this way: some people "grow out" of epilepsy, while others aren't diagnosed until later in life. So, at any given moment about 1% of the population has epilepsy, but over a lifetime a person has about a 4% chance of developing it, hence the 1 in 26). Epilepsy is the fourth most common neuological disorder, after migraine, stroke, and Alzheimer's disease.
The IOM was asked by 24 sponsoring federal agencies and nonprofit organizations to examine the public health dimensions of epilepsy, focusing on public health surveillance and data collection; population and public health research; health policy, health care, and human services; and education for people with the disorder and their families, health care providers and the public. The IOM committee presents recommendations to improve the lives of people with epilepsy in its report, Epilepsy Across the Spectrum: Promoting Health and Understading.
This report emphasizes five key messages: 1. Epilepsy is a common and a complex neurological disorder that affects health and quality of life. In the provision of coordinated health and human services, a whole-patient perspective is needed.
2. Effective treatments are available for many types of epilepsy, but timely referrals and access to those treatments fall short. Better data from surveillance and research could improve epilepsy care and prevention.
3. Many health professionals need to be better informed about epilepsy.
4. Education efforts for people with epilepsy and their families need to be thorough and sensitive to health literacy and cultural considerations.
5. The stigma of epilepsy has to be eliminated.
Given the current gaps in epilepsy knowledge, care, and education, the committee believes there is an urgent need to take action - across multiple dimensions - to improve the lives of people with epilepsy and their families. The committee provides research priorities to further develop the evidence base, and it recomments realistic, feasible, and action-oriented steps for a variety of stakeholders to enable short and long-term improvements for people with epilepsy. For more information and the full report with details (over 400 pages!), click here.