Surges Rainer, Conrad Stefan, Hamer Hajo M, Schulze-Bonhage Andreas, Staack Anke M, Steinhoff Bernhard J, Strzelczyk Adam, Trinka Eugen
Klinik und Poliklinik für Epileptologie, Universitätsklinikum Bonn, Venusberg-Campus 1, 53127, Bonn, Deutschland.
Deutsche Epilepsievereinigung, Berlin, Deutschland.
Nervenarzt. 2021 Aug;92(8):809-815. doi: 10.1007/s00115-021-01075-3. Epub 2021 Feb 16.
Sudden unexpected death in epilepsy (SUDEP) is the sudden and unexpected death of an epilepsy patient, which occurs under benign circumstances without evidence of typical causes of death. SUDEP concerns all epilepsy patients. The individual risk depends on the characteristics of the epilepsy and seizures as well as on living conditions. Focal to bilateral and generalized tonic-clonic seizures (TCS), nocturnal seizures and lack of nocturnal supervision increase the risk. Most SUDEP cases are due to a fatal cascade of apnea, hypoxemia and asystole in the aftermath of a TCS. Two thirds of SUDEP cases in unsupervised epilepsy patients with TCS could probably be prevented. Wearables can detect TCS and alert caregivers. SUDEP information is desired by most patients and relatives, has a favorable impact on treatment adherence and behavior and has no negative effects on mood and quality of life.Recommendations of the committee on patient safety of the German Society of Epileptology: the ultimate treatment goal is seizure freedom. If this cannot be achieved, control of TCS should be sought. All epilepsy patients and their relatives should be informed about SUDEP and risk factors. Patients and relatives should be informed about measures to counteract the elevated risk and imminent SUDEP. The counselling should be performed during a face-to-face discussion, at the time of first diagnosis or during follow-up visits. The counselling should be documented. Wearables for TCS detection can be recommended. If TCS persist, therapeutic efforts should be continued. The bereaved should be contacted after a SUDEP.
癫痫性猝死(SUDEP)是指癫痫患者在无典型死因证据的良性情况下突然意外死亡。SUDEP涉及所有癫痫患者。个体风险取决于癫痫和发作的特征以及生活条件。局灶性至双侧性和全身性强直阵挛发作(TCS)、夜间发作以及缺乏夜间监护会增加风险。大多数SUDEP病例是由于TCS后出现的致命性呼吸暂停、低氧血症和心搏停止的连锁反应。在未受监护的患有TCS的癫痫患者中,三分之二的SUDEP病例可能可以预防。可穿戴设备能够检测TCS并向护理人员发出警报。大多数患者及其亲属都想了解SUDEP信息,这对治疗依从性和行为有积极影响,且对情绪和生活质量没有负面影响。德国癫痫学会患者安全委员会的建议:最终治疗目标是无癫痫发作。如果无法实现这一目标,则应寻求控制TCS。应告知所有癫痫患者及其亲属有关SUDEP和风险因素的信息。应告知患者及其亲属应对风险增加和即将发生的SUDEP的措施。咨询应在首次诊断时或随访期间进行面对面讨论时进行。咨询情况应记录在案。可以推荐用于检测TCS的可穿戴设备。如果TCS持续存在,应继续进行治疗努力。SUDEP发生后应与死者家属联系。