Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists
Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists
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DOI：
10.1007/s10072-010-0365-7
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发表时间：
2011-04-01
影响因子：
3.3
通讯作者：
Moja, Egidio Aldo
中科院分区：
文献类型：
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作者：
Vegni, Elena;Leone, Daniela;Moja, Egidio Aldo
癫痫猝死(SUDEP)是一种癫痫患者突然死亡且未发现其他死因的综合征。将SUDEP告知患者及其家属的问题仍然是一个问题。这项研究的目的是探索对癫痫感兴趣的意大利医生是否认为他们应该与患者和/或他们的家人讨论SUDEP。共发放问卷315份，回收195份(61.9%)。17名受访者(8.76%)与所有患者讨论了SUDEP，38名(19.59%)与大多数患者讨论了SUDEP，120名(61.85%)与极少数患者讨论了SUDEP，15名(7.73%)与没有患者讨论。在性别、职业年龄(10岁；11岁；11岁；20岁；21岁；30岁；31岁)和医学专业(神经科医生与其他人)方面，没有发现统计学差异。开放式问题提供了医生在管理患者/家人的负面情绪方面的问题，以及为什么医生决定提供信息。
Sudden unexpected death in epilepsy (SUDEP) is a syndrome where a person with epilepsy dies suddenly and no other cause of death is found. The question of informing patients and their families about SUDEP remains a problematic issue. The aim of this study is to explore whether Italian physicians interested in epilepsy believe that they should discuss SUDEP with patients and/or their families. A total of 315 questionnaire were distributed, of which 195 (61.9%) were returned. Seventeen respondents (8.76%) discussed SUDEP with all of their patients, 38 (19.59%) with the majority of patients, 120 (61.85%) with very few of their patients and 15 (7.73%) with none of their patients. No statistical differences among groups were found for gender, professional age (a parts per thousand currency sign10 years; a parts per thousand yen11 yearsa parts per thousand currency sign20 years; a parts per thousand yen21 yearsa parts per thousand currency sign30 years; a parts per thousand yen31 years) and medical specialty (neurologists vs. others). Open questions offered insights into the physicians' problem of managing the negative emotions of patients/family and why the physicians decided to give information.