Neurologists' perspectives on SUDEP communication: A comparative study across five European countries

Objectives: The leading cause of epilepsy mortality is Sudden unexpected death in epilepsy (SUDEP). National and international guidelines recommend that people with epilepsy are counseled on SUDEP risk at the point of diagnosis or at the earliest opportunity. This study compares neurologist views from five European countries on attitudes and relevance of SUDEP communication. Methods: A cross-sectional online survey of 17 Likert questions using validated themes was circulated via different ILAE and/or equivalent organizations using a non-discriminatory exponential snowballing technique, leading to a non-probability sampling. Data were analyzed using descriptive statistics, Kruskal–Wallis, Chi-square, and Fisher's exact tests. Significance was accepted at p < 0.05. Results: There were 313 responses from neurologists from across five countries (UK, Norway, Sweden, Spain, Hungary). Significant heterogeneity (4%–53%) was found between neurologists of different countries in discussing SUDEP with a person with newly diagnosed epilepsy. There were significant inter-country differences in the amount of time neurologists spent in epilepsy care generally and SUDEP discussions particularly. Significant inter-country barriers to SUDEP communication included time constraints, clinical complexity, perceived fear of causing distress to the patient, presumed poor ability of patient/carers to comprehend risk, and a self-perceived low risk of SUDEP. Significance: Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE, there remains hesitation, avoidance, and subjectivity in neurologists having SUDEP-related conversations, more so in mainland European countries (Norway, Sweden, Spain and Hungary) than in the UK. Training and education are required to improve communication, engagement, and decision-making. Plain Language Summary: Sudden unexpected death in epilepsy (SUDEP) is the leading cause of death in people with epilepsy, and international guidelines recommend discussing this risk early after diagnosis. This study surveyed 313 neurologists from the UK, Norway, Sweden, Spain, and Hungary to understand their views on SUDEP communication. Results showed large differences between countries in how often and how openly neurologists discussed SUDEP. Barriers included time constraints, fear of upsetting patients, and doubts about patients' understanding. UK neurologists were more likely to have these conversations than their European peers. More training is needed to support consistent and effective SUDEP communication across countries.