University of South Wales, Pontypridd, UK.
Swansea Bay University Health Board, Port Talbot, UK.
Eur J Neurol. 2024 Sep;31(9):e16375. doi: 10.1111/ene.16375. Epub 2024 Jun 4.
Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared.
A cross-sectional online mixed methodology survey of 17 Likert and free-text response questions using validated themes was circulated via International League against Epilepsy/Epilepsy Specialist Nurses Association in the UK and International League against Epilepsy/Epilepsinet in Norway using a non-discriminatory exponential snowballing technique leading to non-probability sampling. Quantitative data were analysed using descriptive statistics and Mann-Whitney, Kruskal-Wallis, chi-squared and Fisher's exact tests. Significance was accepted at p < 0.05. Thematic analysis was conducted on free-text responses.
Of 309 (UK 197, Norway 112) responses, UK clinicians were more likely to have experienced an SUDEP (p < 0.001), put greater importance on SUDEP communication (p < 0.001), discuss SUDEP with all PWE particularly new patients (p < 0.001), have access and refer to bereavement support (p < 0.001) and were less likely to never discuss SUDEP (p < 0.001). Significant differences existed between both countries' neurologists and nurses in SUDEP counselling with UK clinicians generally being more supportive. UK responders were more likely to be able to identify bereavement support (p < 0.001). Thematic analysis highlighted four shared themes and two specific to Norwegians.
Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE there remain hesitation, avoidance and subjectivity in clinicians having SUDEP-related conversations, more so in Norway than the UK. Training and education are required to improve communication, engagement and decision making.
癫痫猝死（SUDEP）是癫痫死亡率的主要原因。所有国际指南都强烈主张与癫痫患者（PWE）合作的临床医生讨论 SUDEP。本文比较了英国和挪威临床医生在 SUDEP 咨询方面与 PWE 合作的观点。
通过国际抗癫痫联盟/癫痫专科护士协会在英国和国际抗癫痫联盟/Epilepsinet 在挪威使用非歧视性指数雪球技术进行非概率抽样，对 17 个利克特和自由文本回答问题的横断面在线混合方法调查进行了分发，该调查使用了经过验证的主题。使用描述性统计和 Mann-Whitney、Kruskal-Wallis、卡方和 Fisher 精确检验分析定量数据。p<0.05 时认为具有统计学意义。对自由文本回复进行主题分析。
在 309 份（英国 197 份，挪威 112 份）回复中，英国临床医生更有可能经历过 SUDEP（p<0.001），更重视 SUDEP 沟通（p<0.001），与所有 PWE 特别是新患者讨论 SUDEP（p<0.001），可以获得并转介丧亲支持（p<0.001），并且不太可能从不讨论 SUDEP（p<0.001）。两国神经病学家和护士在 SUDEP 咨询方面存在显著差异，英国临床医生通常更支持。英国应答者更有可能识别丧亲支持（p<0.001）。主题分析突出了四个共同主题和两个挪威特有的主题。
尽管所有国际指南都指出需要/重要性与所有 PWE 讨论 SUDEP，但临床医生在进行与 SUDEP 相关的对话时仍然存在犹豫、回避和主观性，在挪威比在英国更为明显。需要培训和教育来改善沟通、参与和决策制定。
