Real-world discussions around sudden unexpected death in epilepsy (SUDEP) on Reddit: a qualitative study

Sudden unexpected death in epilepsy (SUDEP) is the leading cause of epilepsy-related mortality and a major contributor to premature death among people with epilepsy (PWE). Although organizations such as the American Epilepsy Society and the National Institute for Health and Care Excellence recommend discussing SUDEP with patients, there is no clear consensus regarding how or when these discussions should occur. Many patients therefore seek information outside clinical settings, including on social media. This study explores how SUDEP is discussed within the subreddit “r/Epilepsy” on Reddit, the largest epilepsy-focused online community on the platform. The objective is to better understand patient perspectives, emotional responses, and lived experiences related to SUDEP in a real-world, patient-driven environment. We will conduct a mixed-methods study combining qualitative thematic analysis and descriptive quantitative analysis. Publicly available posts published between June 28, 2022 and October 17, 2025 that explicitly describe experiences, perceptions, or emotions related to SUDEP will be included. Data will be retrieved using a Python script identifying posts containing the keyword “SUDEP.” Extracted content will include post text, comments, dates, and engagement metrics. Usernames will be deidentified prior to analysis. An inductive thematic analysis will be performed collaboratively by three researchers using an iterative, consensus-based coding process. Codes will be grouped into themes and synthesized into a conceptual model. Descriptive statistics will summarize post frequency, engagement, and thematic distribution. This study aims to clarify how SUDEP is perceived and discussed outside clinical settings and to inform more patient-centered communication strategies in epilepsy care.