ArticleEuropean journal of neurology2024
Epilepsy professionals' views on sudden unexpected death in epilepsy counselling: A tale of two countries.
Article in European journal of neurology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed.
- Evaluation of current practices and communication surrounding sudden unexpected death in epilepsy (SUDEP): A survey analysis of healthcare practitioners.Epilepsia open · 2026Article
- Holistic management of epilepsy in adults with intellectual development disorders.Epileptic disorders : international epilepsy journal with videotape · 2026Article
- Towards a Unified Research Agenda: International Consensus to Advance Understanding and Prevention of Sudden Unexpected Death in Epilepsy.Epilepsy currents · 2026Review
- Article
- SUDEP update 2026: recent advances in experimental and clinical research.Current opinion in neurology · 2026Review
- Rescue epilepsy medication and training: A comparison between midazolam use, guidelines, clinical practice, and possibilities in the UK and Norway.Epilepsia open · 2025Article
- Neurologists' perspectives on SUDEP communication: A comparative study across five European countries.Epilepsia open · 2025Article
- Epilepsy professionals' views on sudden unexpected death in epilepsy counselling: A tale of two countries.European journal of neurology · 2024Article
- How many lives must be lost before we consider SUDEP counselling an obligation rather than a choice? The need for public policies.European journal of neurology · 2024Article
- Knowledge, attitudes and practices of psychiatrists in India regarding sudden unexpected death in epilepsy (SUDEP) and seizure-related harm.Epilepsy & behavior reports · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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. 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.
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