Talking SUDEP: Gaps, confidence and training needs among Spanish epilepsy professionals

Sudden Unexpected Death in Epilepsy (SUDEP) is a major cause of epilepsy-related mortality, yet discussions about SUDEP in clinical settings remain inconsistent. This study aimed to assess the perspectives, practices, and barriers related to SUDEP counselling for epilepsy professionals in Spain.

A cross-sectional online survey of 17 Likert style questions was disseminated via the Spanish Epilepsy Society between September 2023 and February 2024 to epilepsy professionals in Spain using a non-discriminatory exponential snowballing technique leading to non-probability sampling. The survey was a validated instrument previously employed in similar international studies. Questions revolved around SUDEP communication and counselling. Descriptive and comparative analyses were conducted.

54 professionals responded, with the majority being adult neurologists-epileptologists. While most respondents acknowledged the importance of SUDEP counselling, none reported discussing it with all patients. SUDEP was typically discussed in response to risk changes (85 %) or patient enquiry (47 %). Only 9 % used structured communication tools, and 28 % had access to bereavement support services. Perceived low clinical risk (74 %), concern about patient distress (62 %), and limited consultation time (57 %) were the most common barriers. Comparative analysis revealed no statistically significant differences between adult neurologists and paediatric neurologists, though paediatricians reported more negative counselling experiences.

Despite strong recognition of its importance, SUDEP communication in Spain is infrequent and inconsistent. Key barriers include clinical judgment, time constraints, and limited resources. The findings underscore the need for national guideline, structured tools, and targeted training to support routine SUDEP counselling in Spanish clinical practice.