What information about sudden unexpected death in epilepsy (SUDEP) is available on YouTube?

We sought to assess and analyze the information available about sudden unexpected death in epilepsy (SUDEP) and the general perception of this condition by the public on YouTube. We evaluated all consecutive videos containing references to 'sudden unexpected death in epilepsy' and 'SUDEP' on YouTube. Data were extracted after applying the inclusion and exclusion criteria. Various characteristics of the videos including the type of content, uploading source, likes, dislikes, and comments received were classified and analyzed. A total of 113 videos were included, with the majority uploaded by individual users (51.3%) followed by activist groups (40.7%). The primary content from individual users created videos were tribute to family members who died because of SUDEP (43.1%) and personal narration (36.2%), whereas educational/scientific information (55%) and advertisements (45%) to raise SUDEP awareness comprised the videos from professional societies and activist groups. More than three-fourths of the comments to the videos were in response to individual user uploaded videos, and mainly comprised of positive statement conveying empathy or describing personal encounters. Substantial information is available regarding SUDEP on YouTube; however, the viewer engagement remains limited. Individual user-created videos about SUDEP are the most popular and viewer engaging. Incorporating personal/anecdotal experiences in addition to scientific information in the video content might further improve the viewer engagement.

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