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.