Chinese expert consensus on disclosure of sudden unexpected death in epilepsy

doi:10.3969/j.issn.1672-6731.2025.11.002

Abstract

Abstract: Sudden unexpected death in epilepsy (SUDEP) refers to the sudden, unexpected, and witnessed or unwitnessed death of a patient with epilepsy, with or without evidence of a seizure, excluding status epilepticus, non-traumatic and non-drowning causes, and where autopsy reveals no structural or toxicological cause of death. Identifying high-risk populations and implementing appropriate interventions are crucial for SUDEP prevention. However, there is currently no consensus on how to select suitable recipients, content, responsible parties, and methods for disclosure. The Comorbidity Committee of China Association Against Epilepsy (CAAE) formed a working group to develop this consensus, employing the Delphi method to finalize 7 recommendations. The consensus addresses the recipients, content, responsible parties, and methods of SUDEP disclosure, with a focus on determining appropriate disclosure targets to avoid excessive anxiety caused by over-disclosure.

Key words: Sudden unexpected death in epilepsy, Informed consent, Risk factors, China

摘要： 癫痫猝死指癫痫患者突发的、意外的、有或无目击的、有或无癫痫发作证据且排除癫痫持续状态、非创伤性和非溺死性、尸检未发现结构性或中毒性死因的死亡。明确高风险人群并予以恰当干预措施对预防癫痫猝死具有重要意义，但如何选择适宜的告知对象、告知内容、告知主体、告知方式等目前尚未达成共识。中国抗癫痫协会共患病专业委员会组建共识专家委员会启动《癫痫猝死知情告知中国专家共识》撰写工作，按照德尔菲法最终形成7条推荐意见，涵盖癫痫猝死的告知对象、告知内容、告知主体及告知方式等，主要针对告知对象的确定，以避免过度告知引发的焦虑情绪等。

关键词: 癫痫意外猝死, 知情同意, 危险因素, 中国

Comorbidity Committee of China Association Against Epilepsy. Chinese expert consensus on disclosure of sudden unexpected death in epilepsy[J]. Chinese Journal of Contemporary Neurology and Neurosurgery, 2025, 25(11): 986-991.

中国抗癫痫协会共患病专业委员会. 癫痫猝死知情告知中国专家共识[J]. 中国现代神经疾病杂志, 2025, 25(11): 986-991.

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