Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy

Abstract

SUMMARYThe American Epilepsy Society and the Epilepsy Foundation jointly convened a task force to assess the state of knowledge about sudden unexplained death in epilepsy (SUDEP). The task force had five charges: (1) develop a position statement describing if, when, what, and how SUDEP should be discussed with patients and their families and caregivers; (2) design methods by which the medical and lay communities become aware of the risk of SUDEP; (3) recommend research directions in SUDEP; (4) explore steps that organizations can take to perform large-scale, prospective studies of SUDEP to identify risk factors; and (5) identify possible preventive strategies for SUDEP. Some of the major task force recommendations include convening a multidisciplinary workshop to refine current lines of investigation and to identify additional areas of research for mechanisms underlying SUDEP; performing a survey of patients and their families and caregivers to identify effective means of education that will enhance participation in SUDEP research; conducting a campaign aimed at patients, families, caregivers, coroners, and medical examiners that emphasizes the need for complete autopsy examinations for patients with suspected SUDEP; and securing infrastructure grants to fund a consortium of centers that will conduct prospective clinical and basic research studies to identify preventable risk factors and mechanisms underlying SUDEP. For now, the principal effort in preventing SUDEP should be prompt and optimal control of seizures, especially generalized convulsive seizures.

Sudden unexpected death in epilepsy: a silent killer

“…National Institute for Clinical Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN) in the United Kingdom recommend disclosure of adequate information on SUDEP to every patient, their family or caregivers as a requisite of good practice [35]. The American Epilepsy Society and the Epilepsy Foundation Joint Task Force on SUDEP have similar recommendations [36]. Despite these recommendations, the actual clinical practice varies considerably.…”

Explaining the Unexplained; Expecting the Unexpected: Where Are We with Sudden Unexpected Death in Epilepsy?

“…such as the Joint American Epilepsy Society/Epilepsy Foundation Task Force on SUDEP and the NIH/National Institute of Neurological Disorders and Stroke (NINDS)-sponsored multidisciplinary workshop on SUDEP, there has been an increased emphasis on theoretical models and research to aid our understanding of SUDEP (35,36).…”

Preferences of Patients for Discussing Sudden Unexpected Death in Epilepsy

“…Published guidelines and position statements from professional organisations recommend routine counselling on SUDEP, to provide patients with tai-lored information about the syndrome, to discuss the patient's individual SUDEP risk and measures to reduce this risk. The timing of a SUDEP discussion and the relative emphasis placed on SUDEP are determined by the presence of risk factors and the physician's awareness of the patient's preparedness to receive the information (So et al, 2009, Anonymous, 2012.…”