Sudden unexpected death in epilepsy: Experience of neurologists in Saudi Arabia

Abstract

Importance: Sudden unexpected death in epilepsy (SUDEP) may account for up to 17% of all deaths in epilepsy. However, it is unknown if neurologists discuss this risk with patients. Objective: This study aimed to examine the understanding and practices of SUDEP by neurologists in Saudi Arabia. Methods: An electronic web-based survey was sent to 125 neurologists using the mailing list of the Saudi Neurology Society. The survey questions included respondents’ demographics, frequency of SUDEP discussion, reasons for discussing/not discussing SUDEP, and perceived patient reactions. Respondents’ knowledge of the SUDEP risk factors was examined using 12 items from the currently available literature. Logistic regression analyses were applied to examine the factors that influence the frequency of SUDEP discussions and perceived patient reactions. Participants: The participants were neurologists who had completed postgraduate training, devoted >5% of their time to clinical care, and had at least one patient with epilepsy in their independent neurology clinic. Results: A total of 60 respondents met the eligibility criteria and completed the surveys. Of them, 25% discussed SUDEP most of the time, 65% sometimes or rarely, and 10% never discussed it. Of those who discussed SUDEP with their patients, 63.3% did it if the patient was at high risk. Poor compliance with antiepileptic drugs (AEDs) was the most common patient factor highlighted (81.7%). The perceived patients’ reactions were variable, with positive reactions (motivation to comply and appreciation) being the most frequent. The majority of respondents (78.3%) had incomplete understanding of the published SUDEP risk factors, with SUDEP knowledge scores ≤2.5 (≤50% of the possible total score). The most identified risk factors were frequent generalized tonic-clonic seizures (83.3%), long duration of epilepsy (53.3%), lack of use or sub-therapeutic levels of AEDs (50%), and AED polytherapy (50%). No association was found between how often SUDEP was discussed and other factors, including training in epilepsy, ≥10 years in practice, seeing ≥100 patients, and having SUDEP cases in the past two years. It was found that patients positively reacted to discussion on SUDEP if neurologists had a good understanding of the SUDEP risk factors (χ2 = 5.773, p = 0.016). Conclusions: Neurologists in Saudi Arabia do not often discuss SUDEP with patients that have epilepsy. Moreover, when they do, they stress a more individualized approach despite having only a limited understanding of the SUDEP risk factors. Our findings suggest that more guidance should be provided to practitioners on how best to counsel their patients about SUDEP.