Knowing the risk of SUDEP: Two family's perspectives and The Danny Did Foundation
Knowing the risk of SUDEP: Two family's perspectives and The Danny Did Foundation
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DOI：
10.1111/epi.12795
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发表时间：
2014-10-01
期刊：
影响因子：
5.6
通讯作者：
Stanton, Thomas F.
中科院分区：
文献类型：
--
作者：
Stevenson, Mark J.;Stanton, Thomas F.
在癫痫社区有很多关于神经科医生是否应该讨论癫痫猝死（SUDEP）的风险与他们的病人和家庭成员的争论。赞成者声称患者有权了解SUDEP。反对者说，风险是如此之低，讨论只担心病人和家属，特别是如果没有什么可以做的，以防止SUDEP。北美的调查显示，癫痫社区对SUDEP知之甚少，神经科医生也不太可能谈论它。然而，对那些失去SUDEP的人的调查显示，绝大多数的父母，配偶和家庭成员希望在癫痫诊断后立即被告知SUDEP。这篇文章是由两个失去SUDEP的家庭写的，他们坚信神经科医生应该在癫痫诊断后不久就讨论SUDEP的风险。
There is much debate in the epilepsy community about whether neurologists should discuss the risk of sudden unexpected death in epilepsy (SUDEP) with their patients and family members. Those in favor purport that patients have a right to know about SUDEP. Opponents say the risk is so low that discussions only worry patients and families, especially if there is nothing that can be done to prevent SUDEP. North American surveys show that the epilepsy community knows little about SUDEP and neurologists are unlikely to talk about it. However, surveys of those bereaved by SUDEP show that an overwhelming majority of the parents, spouses, and family members want to be told about SUDEP immediately after the diagnosis of epilepsy. This article is written by two families bereaved by SUDEP and their strong belief that neurologists should have the discussion about the risk of SUDEP soon after the diagnosis of epilepsy.