Abstracts

Rationale: YouTube videos are an accessible resource for patients and families researching seizure clusters and rescue medication on the internet; however, social media use can also spread misinformation. The lack of a clear definition for a seizure cluster adds to the confusion and further spread of misinformation. This study therefore aimed to assess YouTube videos as educational resources for patients regarding seizure clusters and treatment options since the approval of intranasal benzodiazepine rescue medications.

Methods: We searched for 10 specific terms related to seizure clusters and treatment options. Videos were rated via 3 criteria: accurate seizure cluster definition, appropriate FDA-approved treatment recommendation, and correct visual demonstration of rescue product. Ratings were determined by the number of criteria present: 0 elements=very poor; 1=poor; 2=good; and 3=great. Seizure clusters were defined according to this definition: ≥2 seizures within a 24-hour period. FDA-approved treatment recommendations included rectal Diastat, intranasal Nayzilam, or intranasal Valtoco. A full product demonstration included using the therapy on a person, dummy, or computer-generated image. Videos published since approval of intranasal rescue medications (i.e., within the last 5 years) were included; videos uploaded 6 years or earlier were excluded. We analyzed the first 20 videos found after exclusions. Other collected data collected were video duration, upload year, and speaker/narrator credentials.

Results: We rated 6/20 videos good and 5/20 great. Seizure clusters, Nayzilam, and Valtoco generated the highest number of videos meeting criteria; remaining searches garnered < 8 videos each. Over half (11/20) of the “seizure clusters,” 12/20 of the “Nayzilam,” and 18/20 of the “Valtoco” videos were rated good or great. Fifty-three videos (27%) defined seizure clusters, 26 (49%) offered an incomplete description, and 14 (26%) offered none. Sixty-seven (34%) recommended an appropriate FDA-approved seizure rescue medication, 52 (78%) of which discussed proper drug indication, a further 2 (3%) of which provided only the approved age range or route of administration and 13 (19%) afforded no information. Sixty videos (29%) demonstrated rescue product usage with 43 videos (72%) providing a full demonstration of rescue product usage and 15 (25%) describing either the method of use or showing a picture of the device without giving a demonstration.

Conclusions: Finding informative YouTube videos on seizure cluster management is difficult. While several videos appeared to be effective as patient and provider education, applying less specific terminology returned unrelated or unhelpful videos. Healthcare institutions and pharmaceutical companies should produce brief, helpful videos of rescue therapy and arm patients with search terms to facilitate better navigation of educational resources. Given the life-threatening component of seizure clusters and the paucity of videos that accurately describe seizure clusters, there is a need for videos from reputable healthcare sources to provide pertinent and readily understood information.

Funding: N/A