Knowledge and experience with Sudden Unexpected Death in Epilepsy (SUDEP) among neurologists in the Eastern Mediterranean Region (EMR)

Abstract

Abstract Objective SUDEP is one of the causes of mortality in patients with epilepsy. We investigated SUDEP discussion practices among neurologists in the EMR to identify gaps in knowledge and to increase awareness. Methods An online survey was sent out to neurologists practicing in the EMR through registered emails and to attendees of local neurology conferences. Results: 132 practitioners completed the survey. 19.7% respondents were from Egypt, 15.2% from Sudan, 8.3% from KSA, and 4.5% from Syria. Only 1.5% of the respondents discussed SUDEP with their patients nearly all of the time, while 46.2% rarely discuss SUDEP. 18% of the respondents had experienced definite or probable SUDEP in the past 24 months of their clinical practice. Top three reactions to SUDEP discussion were distress (74%), anxiety (70.5%), and depression (65.9%). 77.3% of the respondents believe that patients are at minimal risk of SUDEP, 37.9% fear it would affect patients’ mood or quality of life, and 27.3% believe SUDEP is so rare and the risks of discussion outweigh potential benefits. We found no significant association between years of independent practice, number of patients seen annually, number of SUDEP in the past 24 months and how often respondents discussed SUDEP. Conclusion Neurologists in the EMR rarely discuss SUDEP with their patients / caregivers. Negative reactions and underestimating the risk of SUDEP may be the reason, suggesting lack of awareness among practitioners, patients, and caregivers. Framing the discussion positively and using different resources to support patients / caregivers around SUDEP may minimize negative reactions.