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

Autor: Watkins L; University of South Wales, Pontypridd, UK.; Swansea Bay University Health Board, Port Talbot, UK.; Cornwall Intellectual Disability Equitable Research (CIDER), University of Plymouth Peninsula School of Medicine, Truro, UK., Henning O; National Epilepsy Center, Oslo University Hospital, Oslo, Norway., Bassett P; Statsconsultancy Ltd, Bucks, UK., Ashby S; SUDEP Action, Wantage, UK., Tromans S; SAPPHIRE Group, Department of Population Health Sciences, University of Leicester, Leicester, UK.; Adult Learning Disability Service, Leicestershire Partnership NHS Trust, Leicester, UK., Shankar R; Cornwall Intellectual Disability Equitable Research (CIDER), University of Plymouth Peninsula School of Medicine, Truro, UK.; Cornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Truro, UK.
Jazyk: angličtina
Zdroj: European journal of neurology [Eur J Neurol] 2024 Sep; Vol. 31 (9), pp. e16375. Date of Electronic Publication: 2024 Jun 04.
DOI: 10.1111/ene.16375
Abstrakt: Background and Purpose: 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.
Methods: 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.
Results: 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.
Discussion: 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.
(© 2024 The Author(s). European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)
Databáze: MEDLINE
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