Sudden unexpected death in epilepsy: A pilot study on neurologists' knowledge and experience in the Eastern Mediterranean region

Background- Sudden unexpected death in epilepsy (SUDEP) is an important concern in patients with epilepsy who are otherwise healthy. Current knowledge of SUDEP and attitudes of neurologists in the Eastern Mediterranean Region (EMR) towards discussing SUDEP with their patients remain unknown. Objective- We aimed at assessing knowledge, attitudes and factors affecting SUDEP discussion practices of neurologists practicing in the EMR. Methodology- An electronic and paper-based survey was sent to 350 neurologists practicing in the EMR. They were questioned about the frequency, timing, and factors affecting their willingness to initiate SUDEP discussion. We also included questions about perceived patient reactions towards SUDEP discussions and neurologists' preferred way to provide SUDEP information to their patients. Results- We received 132 responses from the 350 surveys sent out (response rate 37.7%). Our results showed that only 1.5% of the neurologists discussed SUDEP with “most” of their patients and their caregivers while 55.3% “rarely” or “never” discussed it. Factors such as additional epilepsy training and more years of clinical experience did not significantly affect the frequency of SUDEP discussion (p= 0.329, p= 0.728). A significant negative association between the number of patients seen per year and the frequency of SUDEP discussion was seen (P = 0.046). Based on their selection of known risk factors, 81% of neurologists were considered as having insufficient knowledge of SUDEP. The top three perceived reactions by the neurologists on SUDEP discussion were distress (74.2%), anxiety (70.5%) and depression (65.9%). Most neurologists initiated SUDEP discussion by themselves and preferred brochures/pamphlets, websites and training sessions to provide SUDEP information. Conclusion- Neurologists in the EMR rarely discuss SUDEP, and have limited knowledge about its risk factors. Upon discussing SUDEP, they overwhelmingly receive negative reactions but not always. Based on our findings, we believe an unintended knowledge gap exists on part of the neurologists. This, coupled with a lack of trained epilepsy nurses and patient education material in regional languages can also be attributed to poor SUDEP discussion practices in the EMR.