Real-World Practices in Educating Patients and Caregivers About Sudden Unexpected Death in Epilepsy: A Scoping Review.

Abstract

Background: Sudden unexpected death in epilepsy (SUDEP) is the sudden and unexpected death of an individual with epilepsy unrelated to trauma or drowning that may or may not correlate with a recent seizure. The estimated annual prevalence of SUDEP is 1.2 per 1000 patients. Dissemination of knowledge about SUDEP helps prevent deaths in patients with epilepsy (PWE) by managing the risk factors and educating patients and their caregivers.

Objectives: This scoping review aimed to highlight the gap and address the importance of educating PWE and their caregivers about SUDEP.

Methods: We reviewed English-language studies published from 2015 to 2025 that were available in PubMed, Scopus, and Google Scholar. Qualitative, quantitative, and mixed-methods research studies were considered. Studies that lacked sufficient data or were not aligned with the conceptual framework as well as books, reviews, or animal research were excluded. Data were extracted using a standardized form.

Results: Of 318 studies retrieved in the initial search, 20 were included. SUDEP discussion by neurologists was inconsistent and often limited to high-risk cases. Awareness among PWE and caregivers was low (PWE: 12%-27%; caregivers: 5%-31.5%), with few receiving information from clinicians. Education sometimes caused short-term anxiety, although some studies reported improvements in medication adherence and lifestyle. Most studies supported universal SUDEP discussion, preferably delivered face-to-face by neurologists.

Conclusions: SUDEP education is generally well-received and could positively influence behavior. Despite low baseline awareness, patients with epilepsy and caregivers desire information regarding SUDEP, highlighting the need for clear guidelines and integration of SUDEP education into routine epilepsy care.