YouTube Videos as Educational Resources for Seizure Clusters and Treatment Options: Cross-Sectional Observational...

Patients with seizure clusters and their families often use YouTube videos as resources for information about the illness and how to use concomitant rescue medications; however, many videos include misinformation or incorrect information that could potentially cause harm.

This study aims to examine YouTube videos intended as educational and instructional resources for seizure clusters and treatment options posted since the approval of intranasal benzodiazepine rescue medications in 2019 and to assess their accuracy and quality using a 3-item rating scale.

We searched YouTube for 10 specific terms related to seizure clusters and treatment options and analyzed videos from the first 20 results for each to mimic internet user behavior when choosing results with search engines. Videos were rated on 3 criteria: accurate seizure cluster definition, appropriate US Food and Drug Administration (FDA)-approved treatment recommendation, and correct visual demonstration of rescue medication use. A single author rated the videos based on the presence of specific subcriteria of all 3 primary criteria in each video. Score assignment was based on the number of present subcriteria.

Seizure clusters and trade names generated the highest number of videos meeting criteria; other search terms, including nonproprietary names, garnered <8 videos each. Only 19.5% (n=39) of the 200 collected videos provided accurate descriptions of seizure clusters, while 61.0% (n=122) offered no definition, 37.0% (n=74) recommended at least 1 FDA-approved rescue medication, and 37.5% (n=75) offered no rescue therapy at all; 26.5% (n=53) provided a full demonstration of rescue medicine, while 62.5% (n=125) did not. Only 4.5% (n=9) of videos included all subcriteria of the 3 primary criteria. Search results for specific trade names yielded more results, while less specific terminology returned unrelated or unhelpful videos.

Accurate YouTube videos of seizure cluster management are limited and represent a knowledge gap that should be addressed to avoid patient harm. To facilitate better navigation of educational and instructional resources, clinicians should have a ready list of videos available to give to patients or provide a list of search terms that are known to produce accurate results to facilitate better searches. Reputable health care sources could also produce brief, helpful videos of each rescue therapy with search terms that direct patients to their content.