Report of the American Epilepsy Society and the Epilepsy Foundation joint task force on sudden unexplained death in epilepsy

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So EL, Bainbridge J, Buchhalter JR, Donalty J, Donner EJ, Finucane A, Graves NM, Hirsch LJ, Montouris GD, Temkin NR et al. (2009) Report of the American Epilepsy Society and the Epilepsy Foundation joint task force on sudden unexplained death in epilepsy. Epilepsia 50:4 917–22.

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Abstract: The 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.

Keywords: Patient care, Preventive measures, Risk factors, Seizures

Context

  • This report of an American Epilepsy Society and Epilepsy Foundation task force discusses strategies for improving awareness of SUDEP and focusing research. It highlights the importance of prospective studies in particular. In terms of prevention the article emphasizes that while our current understanding of causes of SUDEP is incomplete, evidence suggests that good seizure control plays an important role. In addition, the position taken by the task force regarding whether and when to inform patients and families about SUDEP is valuable, as is the discussion of the importance of improved awareness of SUDEP among both medical practitioners and laypersons and the need for more autopsy data and greater awareness among coroners and medical examiners.

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