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Talking SUDEP: Gaps, confidence and training needs among Spanish epilepsy professionals
Je Ssy Low1, Lance Watkins2, Kevin Hampel3
1Swansea Bay University Health Board, Swansea, UK.
Epilepsy & Behavior : E&B
|December 3, 2025
Summary
Epilepsy professionals in Spain rarely discuss Sudden Unexpected Death in Epilepsy (SUDEP) due to perceived low risk and time limits. Improved guidelines and training are needed for consistent SUDEP counselling.
Area of Science:
- Neurology
- Public Health
Background:
- Sudden Unexpected Death in Epilepsy (SUDEP) is a significant cause of mortality in epilepsy patients.
- Clinical discussions regarding SUDEP are inconsistent, highlighting a gap in patient care.
Purpose of the Study:
- To assess epilepsy professionals' perspectives on SUDEP counselling.
- To identify current practices and barriers to SUDEP discussions in Spain.
Main Methods:
- A cross-sectional online survey was distributed to Spanish epilepsy professionals.
- The survey utilized a validated instrument with Likert-style questions focusing on SUDEP communication.
- Non-probability sampling via snowballing was employed, with 54 professionals responding.
Main Results:
- Most respondents recognized SUDEP counselling importance but did not discuss it with all patients.
- Barriers included perceived low clinical risk (74%), patient distress concerns (62%), and time constraints (57%).
- Few professionals used structured tools (9%) or had access to bereavement support (28%).
Conclusions:
- SUDEP communication in Spain is infrequent and inconsistent despite awareness.
- Barriers such as clinical judgment, time, and resources impede routine counselling.
- National guidelines, structured tools, and training are essential for effective SUDEP counselling.
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