families, and society; the estimated annual direct medical cost of epilepsy in the United States is $9.6 billion, which does not consider community service costs or indirect costs from losses in quality of life and productivity (these indirect costs are estimated to constitute the majority of the cost burden of epilepsy). Further, epilepsy is associated with substantially higher rates of mortality than experienced in the population as a whole, with sudden unexpected death in epilepsy (SUDEP) being the most common cause of epilepsy-related deaths. Estimates indicate that 10 years of life are lost for people whose epilepsy has a known cause and 2 years are lost for people with epilepsy from an unknown cause. Additionally, estimates of the number of people with epilepsy who die of SUDEP range from 1 of every 10,000 newly diagnosed to 9 of every 1,000 candidates for epilepsy surgery.
A significant challenge for people with epilepsy, as well as for the epilepsy field, has been the multitude of ways that epilepsy is perceived and, in many cases, misperceived. The centuries of misperceptions and misinformation about epilepsy have resulted in people with epilepsy being stigmatized. As a consequence, people with epilepsy and their families may be faced with a lack of social support from extended family members; feelings of parental guilt; social isolation, embarrassment, and fear; and discrimination. Although efforts are being made to correct these misconceptions and to better inform people about the epilepsies, doing so remains a challenge.
Throughout this report, the committee emphasizes the ways in which epilepsy is a spectrum disorder. Epilepsy comprises more than 25 syndromes and many types of seizures that vary in severity. Additionally, people who have epilepsy span a spectrum that includes men and women of all ages and of all socioeconomic backgrounds and races/ethnicities, who live in all areas of the United States and across the globe. The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a childhood disorder that goes into remission (although the seizures may have lifelong consequences), while for others it is a lifelong burden or a condition that develops later in life or in response to an injury or other health condition. These many complexities of epilepsy make it a challenging health condition to convey to the general public to promote understanding and alleviate stigma. This report aims to provide evidence and impetus for actions that will improve the lives of people with epilepsy and their families.
SCOPE OF WORK
In 2010, the Institute of Medicine (IOM) was asked to examine the public health dimensions of the epilepsies with a focus on four areas: