From the Comprehensive Epilepsy Center (C.V., F.H., D.F., O.D.), New York University School of Medicine, NY; Division of Neurology (E.D.), The Hospital for Sick Children, Toronto, Ontario, Canada; Epilepsy Center (B.D.M.), Gardner Neuroscience Institute, University of Cincinnati Health, OH; Department of Pediatrics (J.B.), University of Calgary, Alberta, Canada; and Gertrude H. Sergievsky Center (D.H.), Division of Epidemiology, Columbia University Medical Center, New York, NY.
Neurology. 2019 Jul 16;93(3):e227-e236. doi: 10.1212/WNL.0000000000007778. Epub 2019 Jun 19.
To obtain medical records, family interviews, and death-related reports of sudden unexpected death in epilepsy (SUDEP) cases to better understand SUDEP.
All cases referred to the North American SUDEP Registry (NASR) between October 2011 and June 2018 were reviewed; cause of death was determined by consensus review. Available medical records, death scene investigation reports, autopsy reports, and next-of-kin interviews were reviewed for all cases of SUDEP. Seizure type, EEG, MRI, and SUDEP classification were adjudicated by 2 epileptologists.
There were 237 definite and probable cases of SUDEP among 530 NASR participants. SUDEP decedents had a median age of 26 (range 1-70) years at death, and 38% were female. In 143 with sufficient information, 40% had generalized and 60% had focal epilepsy. SUDEP affected the full spectrum of epilepsies, from benign epilepsy with centrotemporal spikes (n = 3, 1%) to intractable epileptic encephalopathies (n = 27, 11%). Most (93%) SUDEPs were unwitnessed; 70% occurred during apparent sleep; and 69% of patients were prone. Only 37% of cases of SUDEP took their last dose of antiseizure medications (ASMs). Reported lifetime generalized tonic-clonic seizures (GTCS) were <10 in 33% and 0 in 4%.
NASR participants commonly have clinical features that have been previously been associated with SUDEP risk such as young adult age, ASM nonadherence, and frequent GTCS. However, a sizeable minority of SUDEP occurred in patients thought to be treatment responsive or to have benign epilepsies. These results emphasize the importance of SUDEP education across the spectrum of epilepsy severities. We aim to make NASR data and biospecimens available for researchers to advance SUDEP understanding and prevention.
获取北美癫痫猝死（SUDEP）注册中心（NASR）2011 年 10 月至 2018 年 6 月期间转诊的所有病例的医疗记录、家族访谈和与死亡相关的报告，以更好地了解 SUDEP。
对所有 SUDEP 病例进行回顾性审查，通过共识审查确定死因。对所有 SUDEP 病例均查阅可获得的医疗记录、死亡现场调查报告、尸检报告和近亲访谈。由 2 名癫痫专家对癫痫发作类型、脑电图、MRI 和 SUDEP 分类进行裁决。
在 530 名 NASR 参与者中，有 237 例确诊和可能的 SUDEP 病例。SUDEP 死亡者的中位年龄为 26 岁（范围 1-70 岁），女性占 38%。在 143 例有足够信息的病例中，40%有全面性癫痫，60%有局灶性癫痫。SUDEP 影响到各种类型的癫痫，从良性癫痫伴中央颞区棘波（n = 3，1%）到难治性癫痫性脑病（n = 27，11%）。大多数（93%）SUDEP 无目击者；70%发生在看似睡眠期间；69%的患者处于易患体位。只有 37%的 SUDEP 病例服用了最后一剂抗癫痫药物（ASM）。报告的终生强直阵挛发作（GTCS）<10 次的占 33%，0 次的占 4%。
NASR 参与者通常具有先前与 SUDEP 风险相关的临床特征，如年轻成年、ASM 不依从和频繁的 GTCS。然而，相当一部分 SUDEP 发生在被认为是治疗反应良好或患有良性癫痫的患者中。这些结果强调了在整个癫痫严重程度范围内进行 SUDEP 教育的重要性。我们旨在使 NASR 数据和生物样本可供研究人员使用，以促进对 SUDEP 的理解和预防。
Zotero 插件