Sudden unexpected death in epilepsy: A pilot study on neurologists' knowledge and experience in the Eastern Mediterranean region

Saleh, Dina; Kassie, Seada; Hassan, Abeera; Alsaadi, Taoufik

doi:10.1016/j.seizure.2021.11.011

Cited by 4 publications

(1 citation statement)

References 33 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This is particularly evident with the UK data indicating that only 2% ‘rarely or never discuss SUDEP’. The results from Norway are still lower than previous large‐scale surveys (from UK, Europe, North America and Eastern Mediterranean) where non‐discussion ranges from 42% to 68% [25–28]. There is recognition that geography plays a significant role in SUDEP related matters [29].…”

Section: Discussionmentioning

confidence: 96%

Epilepsy professionals' views on sudden unexpected death in epilepsy counselling: A tale of two countries

Watkins,

Henning,

Bassett

et al. 2024

Euro J of Neurology

View full text Add to dashboard Cite

Background and purposeSudden 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.MethodsA 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.ResultsOf 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.DiscussionDespite 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.

show abstract

Section: Discussionmentioning

confidence: 96%