Substantial information is available regarding sudden unexpected death in epilepsy (SUDEP) on YouTube; however, the viewer engagement remains limited. This according to a recent study that sought to assess and analyze the information available about SUDEP and the general perception of this condition by the public on YouTube. Researchers 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. Researchers found:
- 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.
- >three-fourths of the comments to the videos were in response to individual user uploaded videos, and mainly comprised of positive statements conveying empathy or describing personal encounters.
Rayi A, Borad SJ, Kemper SE, Malhotra K. What information about sudden unexpected death in epilepsy (SUDEP) is available on YouTube? [Published online ahead of print December 7, 2018]. Epilepsy Behav. doi:10.1016/j.yebeh.2018.10.017.