POS0359-PARE YouTube AS A SOURCE OF INFORMATION ON AUTOINFLAMMATORY DISEASES

Abstract

BackgroundGetting access to specialists for autoinflammatory diseases (AIDs) is challenging. Therefore, an increasing number of patients and healthcare professionals are seeking information on this topic via the internet, e.g., on the video platform YouTube, which has attracted a huge audience in recent years (1). However, not much is known about the quality of videos pertaining on AIDs.ObjectivesTo assess videos about AIDs uploaded on YouTube and to evaluate the quality and usefulness of available information from both the patient’s and professional healthcarer´s perspective.MethodsA YouTube.com search was conducted in January 2022: Selected keywords were “autoinflammatory diseases” (AID), “periodic fever syndrome” (PFS), “familial mediterranean fever” (FMF), “cryopyrin associated periodic syndrome” (CAPS), “tumor necrosis factor associated periodic syndrome” (TRAPS), “adult onset of still´s disease” (AOSD) and “systemic juvenile idiopathic arthritis”(sJIA). For every keyword, the top 20 videos in their order of relevance were included. Video duration, number of views, likes, dislikes, comments and uploading source were extracted. The quality of a video´s information was evaluated independently by two physicians based on the modified global quality scale (GQS) (2). Subgroup analyses were performed classifying healthcare professionals and patients as target group.ResultsIn total 140 videos were screened. We excluded 5 videos due to language other than English, 7 duplicates and 23 not suitable ones. 105 videos met the inclusion criteria for further analysis. Video characteristics are presented in Table 1. Based on the GQS, overall quality of videos for patients was found to be low in 64,8%, intermediate in 27,6%, and high in 7,6% of videos. The quality of videos for professionals was similar: 54,3% were judged to be of low, 23,8% of intermediate, and 21,9% of high quality (Figure 1). Subgroup analyses focusing on videos for professionals found sJIA videos to achieve the highest scores (31,6% with high quality) whereas videos regarding CAPS were rated the least useful ones (15,4% with high quality). In videos for patients, sJIA videos also ranked highest (42,1% with high quality) whereas no high quality videos could be identified for TRAPS. Videos are more often aimed at specialists such as doctors or medical students (65.7%) and less often at affected patients or relatives (34.3%). Video duration was significantly longer in videos targeting a professional audience (p < 0.001). In videos for professionals, length was significantly correlated with higher quality (p < 0.001).Table 1.Video CharacteristicsFigure 1.Quality ScaleConclusionYouTube as a source of information could have great potential for rare diseases. However, this study demonstrates that the majority of videos regarding AIDs is of limited quality and available videos more often adress users with a professional medical background. Only a small proportion of existing videos provide understandable and useful information for AID patients.