title: Are YouTube seizure videos misleading? Neurologists do not always agree.
abstract: The internet has become the first stop for the public and patients to seek health-related information. Video-sharing websites are particularly important sources of information for those seeking answers about seizures and epilepsy. Because of the widespread popularity of YouTube, we sought to explore whether a seizure diagnosis and classification could reliably be applied. All videos related to "seizures" were reviewed, and irrelevant videos were excluded. The remaining 162 nonduplicate videos were analyzed by 4 independent pediatric neurologists who classified the events as epilepsy seizures, nonepileptic seizures, or indeterminate. Videos designated as epilepsy seizures were then classified into focal, generalized, or unclassified. At least 3 of the 4 reviewers agreed that 35% of the videos showed that the events were "epilepsy seizures", at least 3 of the 4 reviewers agreed that 28% of the videos demonstrated that the events were "nonepileptic seizures", and there was good agreement that 7% of the videos showed that the event was "indeterminate". Overall, interrater agreement was moderate at k=0.57 for epilepsy seizures and k=0.43 for nonepileptic seizures. For seizure classification, reviewer agreement was greatest for "generalized seizures" (k=0.45) and intermediate for "focal seizures" (k=0.27), and there was no agreement for unclassified events (k=0.026, p=0.2). Overall, neurology reviewer agreement suggests that only approximately one-third of the videos designated as "seizures" on the most popular video-sharing website, YouTube, definitely depict a seizure. Caution should be exercised in the use of such online video media for accessing educational or self-diagnosis aids for seizures.
authors.affiliation: IWK Health Centre and Dalhousie University. Electronic address: pbrna@dal.ca.
authors.forename: P M
authors.initials: PM
authors.lastname: Brna
authors.forename: J M
authors.initials: JM
authors.lastname: Dooley
authors.forename: M J
authors.initials: MJ
authors.lastname: Esser
authors.forename: M S
authors.initials: MS
authors.lastname: Perry
authors.forename: K E
authors.initials: KE
authors.lastname: Gordon
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D004501:Education, Medical; D005260:Female; D006801:Humans; D007223:Infant; D033181:Information Dissemination; D008297:Male; D008875:Middle Aged; D010820:Physicians / Q000523:psychology*; D012640:Seizures / Q000503:physiopathology / Q000523:psychology*; D061108:Social Media; D014741:Video Recording; D055815:Young Adult
keywords: Epilepsy; Seizures; Social media; Videos; YouTube