Knowledge, Experience, and Attitudes Toward Sudden Unexpected Death In Epilepsy (sudep) Among Turkish Child and Adult Neurologists: Results From An Online Survey

Objectives: To assess the knowledge, experience, and attitudes toward sudden unexpected death in epilepsy (SUDEP) among Turkish neurologists, as well as to determine the factors associated with discussing or not discussing SUDEP with their patients/caregivers. Methods: An electronic-based survey was sent to 500 child and adult neurologists practicing in Turkey, regarding respondents’ working conditions, experience, and frequency of discussing SUDEP. Results: A total of 208 surveys were completed (67% child neurologists, 33% adult neurologists). Only 4% of the respondents discuss SUDEP “always” with their patients/caregivers, 16.5% “frequently”, 52.5% “rarely”, and 27% “never” discuss. Factors such as having a separate outpatient clinic for epilepsy, more years in neurology practice, and previous SUDEP experience did not significantly affect the frequency of SUDEP discussion, while a significant negative association was found between the number of patients seen per month and the frequency of SUDEP discussion(P=0.057). The top three reasons associated with SUDEP risk were answered as “family history of sudden death from epilepsy”, “receiving multiple antiseizure medications”, and “poor compliance with anti-seizure therapy”. The most common reasons for not discussing SUDEP were stated as “not worrying patients/caregivers unnecessarily” and “not enough time to talk about SUDEP”. Conclusion: For many neurologists, SUDEP is often a challenging and fearful topic to discuss. Parallel to the literature, neurologists in Turkey rarely discuss SUDEP with their patients/caregivers. This study may lead to the development of an effective strategy by organizing awareness-raising courses to ensure a sufficient level of knowledge about SUDEP and encouraging neurologists to discuss SUDEP.