Donner Elizabeth, Buchhalter Jeffrey
Epilepsia. 2014 Oct;55(10):1501-3. doi: 10.1111/epi.12794. Epub 2014 Oct 16.
Sudden unexpected death in epilepsy (SUDEP) is the most tragic potential outcome of epilepsy. Despite recommendations from epilepsy organizations in the United Kingdom and the United States, many neurologists choose not to discuss the risk of SUDEP with their patients with epilepsy. Yet, the literature clearly demonstrates that people with epilepsy and their caregivers want to know more about SUDEP. When health care providers do not provide information, people with epilepsy turn to other sources, risking misinformation and potentially increasing anxiety and distress. Sharing accurate information about SUDEP can optimize epilepsy self-management and engage the person with epilepsy as a partner in their own care. Information about SUDEP must be part of the comprehensive education given to all people with epilepsy.
癫痫猝死(SUDEP)是癫痫最悲惨的潜在后果。尽管英国和美国的癫痫组织给出了相关建议,但许多神经科医生仍选择不与癫痫患者讨论SUDEP的风险。然而,文献清楚地表明,癫痫患者及其照料者希望更多地了解SUDEP。当医疗服务提供者不提供信息时,癫痫患者会转向其他渠道,这有获得错误信息的风险,并可能增加焦虑和痛苦。分享关于SUDEP的准确信息可以优化癫痫自我管理,并让癫痫患者成为自身护理的参与者。关于SUDEP的信息必须成为所有癫痫患者接受的综合教育的一部分。