ORCID

Abstract

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.

Publication Date

2025-09-01

Publication Title

Epilepsia Open

Volume

10

Issue

5

Acceptance Date

2025-07-23

Deposit Date

2025-09-05

Funding

None of the authors has any direct conflict of interest to disclose. LW has received speaker honoraria from UCB and Veriton Pharma. JZ has received speaker honoraria for non‐branded education from UCB, Eisai, Orion Pharma, and Angelini Pharma. JZ, as an employee of Sahlgrenska Univ Hosp, has been an investigator in clinical trials sponsored by GW Pharma, UCB, Bial, SK Life Science, and Angelini Pharma with no personal compensation. ZJ, AK, and PB have no conflict of interest. OJH has received speaker honoraria from Eisai, Roche, Jazz, and UCB Pharma. TT has received honoraria as a speaker for Eisai, UCB, and Angelini Pharma. TT has received research support to EURAP, the International Antiepileptic Drugs and Pregnancy Registry, from Bial, Eisai, GlaxoSmithKline, Teva, GW Pharma, Angelini, UCB, Zentiva, Glenmark Accord, SF Group, and EcuPharma. RS developed the non‐commercial and free‐to‐use SUDEP and Seizure Safety Checklist and the EpSMon app to reduce the risk of SUDEP and enhance seizure safety. RS is the chief investigator of the NIHR adopted national Ep‐ID register. The register is supported and monitored by the National Institute of Health Research UK. The funding for each molecule examined by the register is via an Investigator‐Initiated Support grant from each of the molecule's parent companies. The funding is to RS's NHS institution and goes towards the salary of the research coordinator and the institution's project oversight costs. The contributing companies to date include Eisai, UCB, Bial, Jazz Pharma (previously GW pharma) and Angelini. This work sits outside the submitted work. In addition to the above, RS has received institutional research, travel support, and/or honoraria for talks and expert advisory boards from LivaNova, UCB, Eisai, Neuraxpharm, Veriton Pharma, Bial, Angelini, UnEEG, and Jazz/GW Pharma outside the submitted work. He holds or has held competitive grants from various national grant bodies, including Innovate, Economic and Social Research Council (ESRC), Engineering and Physical Sciences Research Council (ESPRC), National Institute of Health Research (NIHR), NHS Small Business Research Initiative (SBRI) and other funding bodies, including charities, all outside this work. No other author has any declared conflict of interest related to this paper.

Keywords

SUDEP, SUDEP communication, epilepsy mortality, seizures

First Page

1545

Last Page

1557

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