Disinformation and misinformation in epilepsy: An analysis of multiplatform short‐form social media video content

OBJECTIVE: Short-form social media content is increasing in popularity but is at risk for propagating health-related disinformation/misinformation. We aimed to quantify epilepsy-related disinformation/misinformation on three such platforms: TikTok, Instagram Reels, and YouTube Shorts. METHODS: We used the term "epilepsy" on the native search function of TikTok, Instagram Reels, and YouTube Shorts to construct a videobase of 250 videos per platform. Videos unavailable at time of analysis were removed. Three evaluators watched the remaining videos to extract data and met to resolve disagreements. Off-topic, duplicate, and animal videos were excluded. Videos were then categorized as follows: stigmatization, educational, medical advice, personal experience, joke/entertainment, oblique reference, opinion, and advice. Videos were further classified based on if there was any disinformation/misinformation. Videos that presented clinical spells were classified based on if these were likely epileptic seizures or functional/dissociative seizures (FDS). Disinformation/misinformation and FDS prevalence were compared using 95% confidence intervals (CI) among platforms. RESULTS: A total of 677 videos were analyzed (2016-2025). After exclusion criteria, 563 videos remained, 167 from TikTok, 196 from Instagram Reels and 200 from YouTube Shorts. Most videos were categorized as personal experience or educational. In total, 102 videos (18.1% [14.9-21.3]) were classified as containing disinformation/misinformation; TikTok has the highest proportion (31.7% [24.7%-38.8]). Furthermore, 115 videos presented any form of clinical spell. Among these, 78 (67.8% [59.3-76.4]) were likely FDS. Instagram Reels had the most PNES videos (88.5% [76.2-100.0]). SIGNIFICANCE: Disinformation/misinformation regarding epilepsy is seen in almost a fifth of videos on short-form content platforms, rising to almost a third on TikTok specifically. More than half of videos depicting spells are FDS. More research is required on the consequences of these videos on public perceptions of epilepsy and on how individuals understand their epilepsy/FDS diagnosis.