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Addressing the gap: SUDEP knowledge and communication among patients and neurologists
Yasmeena Abdelall Kozaa1, Youstina Mohsen1, Mohammad T Abuawwad2
1Mansoura Manchester Program for Medical Education, Faculty of Medicine, Mansoura University, Mansoura, Egypt.
Objectives:
Sudden unexpected death in epilepsy (SUDEP) is a major cause of mortality in epilepsy. Effective management of SUDEP risk depends on a solid understanding of SUDEP and its associated risk factors. This study evaluates the perspectives of both patients and neurologists on SUDEP discussion.
Methods:
A cross-sectional study was conducted at Mansoura University Hospital in Egypt, involving 173 adult epilepsy patients and 26 neurologists. Patients completed structured, in-person surveys assessing their awareness of SUDEP and preferences for receiving related information. Neurologists were surveyed regarding their knowledge of SUDEP risk factors, frequency of SUDEP discussions, and perceived barriers. Data analysis included descriptive statistics, Chi-square tests, and binary logistic regression.
Results:
Among patients, 84 % had never heard of SUDEP; however, 92 % expressed a desire to be informed, with 75 % preferring detailed information from a neurologist. Neurologists demonstrated limited knowledge, with only 27 % correctly identifying key SUDEP risk factors. Additionally, 65 % rarely or never discussed SUDEP with patients, citing concerns about inducing anxiety and impacting quality of life. Knowledge level among neurologists was not significantly associated with the frequency of SUDEP discussions.
Conclusion:
This study identifies a major gap in SUDEP awareness among patients and neurologists, with patients expressing a strong preference for information despite limited discussions by clinicians. Targeted educational initiatives are needed to bridge this communication gap. As the first study from the MENA region to assess both perspectives, it also contributes a unique sociocultural understanding to global SUDEP research.
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