The Ohio State University Wexner Medical Center, Columbus, OH, USA.
Charleston Area Medical Center, Charleston, WV, USA; West Virginia University/Charleston Division, Charleston, WV, USA.
Epilepsy Behav. 2019 Apr;93:125-128. doi: 10.1016/j.yebeh.2018.10.017. Epub 2018 Dec 7.
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.
我们旨在评估和分析 YouTube 上有关癫痫性猝死（SUDEP）的可用信息以及公众对此病症的普遍认知。
我们评估了 YouTube 上所有包含“癫痫性猝死”和“SUDEP”的连续视频。在应用纳入和排除标准后，提取了数据。对视频的各种特征进行了分类和分析，包括内容类型、上传来源、点赞、不喜欢和收到的评论。
共纳入 113 个视频，其中大多数由个人用户上传（51.3%），其次是活动家团体（40.7%）。个人用户制作的视频主要内容是纪念因 SUDEP 而去世的家人（43.1%）和个人叙述（36.2%），而专业协会和活动家团体上传的视频主要是教育/科学信息（55%）和广告（45%）以提高对 SUDEP 的认识。超过四分之三的视频评论是针对个人用户上传的视频的，主要是表达同情或描述个人遭遇的正面陈述。
YouTube 上有大量关于 SUDEP 的信息，但观众的参与度仍然有限。个人用户创建的 SUDEP 视频最受欢迎，也最能吸引观众。在视频内容中纳入个人/轶事经验除了科学信息之外，可能会进一步提高观众的参与度。
