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

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Can semiology predict psychogenic nonepileptic seizures? A prospective study.

OBJECTIVE: Reducing health and economic burdens from diagnostic delay of psychogenic nonepileptic seizures (PNES) requires prompt referral for video electroencephalography (VEEG) monitoring, the diagnostic gold standard. Practitioners make VEEG referrals when semiology suggests PNES, although few semiological signs are supported by well-designed studies, and most VEEG studies neglect to concurrently measure how accurately seizure witnesses can ascertain semiology. In this study, we estimate the value of eyewitness-reported and video-documented semiology for predicting PNES, and we measure accuracy of eyewitness reports. METHODS: We prospectively interviewed eyewitnesses of seizures in patients referred for VEEG monitoring, to inquire about 48 putative PNES and ES signs. Multiple, EEG-blinded, epileptologists independently evaluated seizure videos and documented the presence/absence of signs. We used generalized estimating equations to identify reliable video-documented PNES and ES signs, and we compared eyewitness reports with video findings to assess how accurately signs are reported. We used logistic regression to determine whether eyewitness reports could predict VEEG-ascertained seizure type. RESULTS: We analyzed 120 seizures (36 PNES, 84 ES) from 35 consecutive subjects. Of 45 video-documented signs, only 3 PNES signs ("preserved awareness," "eye flutter," and "bystanders can intensify or alleviate") and 3 ES signs ("abrupt onset," "eye-opening/widening," and postictal "confusion/sleep") were significant and reliable indicators of seizure type. Eyewitness reports of these 6 signs were inaccurate and not statistically different from guessing. Consequentially, eyewitness reports of signs did not predict VEEG-ascertained diagnosis. We validated our findings in a second, prospective cohort of 36 consecutive subjects. INTERPRETATION: We identified 6 semiological signs that reliably distinguish PNES and ES, and found that eyewitness reports of these signs are unreliable. We offer suggestions to improve the accuracy of eyewitness reports.