Thursday, June 23, 2016 – Sunday, June 26, 2016
Recordings of presentations from the conference
OverviewThe Partners Against Mortality in Epilepsy (PAME) biennial conference brings together professionals (clinicians, basic science researchers and others) with public health officials and people who have epilepsy and their families/caregivers. The overarching goal is to plan, conduct, and disseminate content from a multi-disciplinary meeting focused on knowledge sharing that will identify:
- Trends in incidence of epilepsy-related mortality and prevention—particularly Sudden Unexpected Death in Epilepsy (SUDEP)
- Clinical practices to increase adoption of prevention strategies
- Gaps in the knowledge base and stakeholder understanding about mortality in epilepsy
- Opportunities to advance mortality research, prevention, and public awareness
SUDEP BackgroundSUDEP is now recognized as the leading cause of mortality associated with epilepsy, excluding status epilepticus and underlying etiologies. Despite the importance of the problem and the implications for intervention, SUDEP had not received widespread professional attention in the United States prior to the mid-2000s.
The general level of awareness and interest in SUDEP has grown, as evidenced by the growing numbers of publications, posters/presentations and attendance at the SUDEP SIG at recent AES annual meetings. In addition, there has been a significant rise in the number of inquiries from clinical and basic scientists as well as from patients and families via advocacy organizations.
People desire more information regarding cutting-edge research, participation in studies, possible collaborations and networking. This “pent-up demand” led to the original concept to have a meeting that would meet the multiple needs of the SUDEP community.
Needs assessmentMortality in epilepsy, especially SUDEP, was identified by the Institute of Medicine as an area of importance for further investigation and education, focused on “preventing epilepsy-related causes of death, including accidents and injuries, SUDEP, and suicide” (Institute of Medicine. Epilepsy across the spectrum: Promoting health and understanding: Institute of Medicine of the National Academies; 2012). Recent publications in journals devoted to epilepsy research document the continued need for investigation into the causes of SUDEP and for altering clinical practice related to SUDEP among clinicians providing care for those with epilepsy. Two recent papers are examples: Ryvlin and colleagues review the research that suggests potential strategies for prevention for SUDEP but note that “no evidence-based prevention is available” (Ryvlin P et al. Prevention of sudden unexpected death in epilepsy: a realistic goal)
IOM President Harvey Fineberg, M.D., Ph.D. described epilepsy as “a problem remarkably hidden for such a visible illness,” and “a very serious problem that has been too long neglected as a public health concern.” Frances Jensen, M.D., past president of the American Epilepsy Society, has noted that “epilepsy’s high rate of occurrence and heavy burden on patients and families is in stark contrast with the highly insufficient attention the disease gets at all levels of our health care system and our society at large. Gaps in the nation’s ability to deal with epilepsy and its consequences prevail in so many spheres that vigorous action is urgently needed to affect change and create a system that will assure accessible, comprehensive, high‐quality optimal care for every person who has the condition.”
Learning ObjectivesClinician Learning Objectives
- Strengthen the capacity of health care providers to discuss epilepsy-mortality broadly and SUDEP specifically, identify risk factors, communicate prevention strategies.
- Address gaps in care for people with epilepsy and provide strategies for improvement.
- Identify progress made in epilepsy mortality and SUDEP research and direction for future research as well as funding and collaboration opportunities.
- Build collaborations across medical disciplines and among families/advocates to bolster research opportunities and participation.
- Learn about the latest in epilepsy mortality, especially SUDEP research.
- Enable people with epilepsy, families and lay organizations to advance SUDEP awareness and education by facilitating collaborations between support groups, funding sources, health care professionals and others, both nationally and internationally.