M. Joshi, N. R, Rajesh K. Gupta
May 23, 2022
Abstract Introduction YouTube is the second most popular search website worldwide to access health information online. This study was undertaken to assess the reliability and quality of information about myositis on YouTube and delineate attributes of useful videos using standard metrics. Methods We conducted a thorough search on YouTube using 9 search terms related to myositis. The inclusion criteria were content related to myositis, English language and acceptable audio–video quality. Duplicates and advertisements were excluded from the analysis. Videos were classified as useful, not very useful or misleading and patient narratives. Reliability was determined using the mDISCERN criteria, quality using the Global Quality Scale (GQS) and JAMA system, using appropriate cut-offs (mDISCERN > 4, GQS > 4, JAMA > 3). Results Out of a total of 900 videos, 453 were included for the analysis. Seventy-four per cent and 2% provided useful and not very useful information respectively, while 24% were patient narratives. Seventy-one per cent were intended specifically for patients while 69% were for healthcare providers and students. Noteworthily, useful and not very useful videos had similar total views though the number of likes and daily viewership were higher for useful videos (p = 0.024, p = 0.046). Nearly half (47%) of useful videos were by professional medical societies/patient support groups (PSGs) while not very useful ones were by nonmedical media (38%). Physician-predicted usefulness was discordant with score-based usefulness (κ = 0.129). However, GQS emerged as a significant (p = 0.008) predictor of video usefulness in multivariate analysis. Conclusion A large majority of English YouTube videos on myositis provide useful information for patients. Physicians could signpost patients to high-quality useful videos as determined by GQS and sources like professional medical societies and PSGs. Key Points •This study highlights the importance of regulating health information posted online, accessed by millions of people, to gauge the quality of information and to identify and curb misinformation. •It also identifies recommendations for the future for uploading such content on the Internet. •The implications lie in our patients being better informed about their disease as they are important stakeholders in the healthcare decision-making process. Supplementary Information The online version contains supplementary material available at 10.1007/s10067-023-06522-x.