YouTube as a source of information on systemic sclerosis

Abstract

Aim YouTube is a popular online platform which patients and healthcare professionals often use to obtain information. However, the reliability and quality of videos on systemic sclerosis are not known. Method We searched for the key words “systemic sclerosis” and “scleroderma” on YouTube. Features of videos such as the number of views and duration of videos were noted. The reliability and quality of videos were assessed with the modified DISCERN and Global Quality Scale (GQS), respectively. The videos were divided into three categories: useful, misleading and patient experiences. The videos were assessed according to these categories and their quality. Results A total of 200 videos listed by relevance were screened and 115 videos which met the inclusion criteria were analyzed further. Eighty‐four (73%) of the 115 videos were useful, 20 (17.4%) were misleading, and 11 (9.6%) were patients' experiences. Useful videos had higher DISCERN and GQS scores compared to misleading videos and videos that contain patient experiences (P < 0.001). High‐quality videos were mostly uploaded by academic institutions/professional organizations or physicians. Conclusions The majority of YouTube videos have useful information on scleroderma and are important educational sources for both patients and physicians. However, patients in particular should be aware that videos might include advertisements and misleading information.

Digital health information on autoinflammatory diseases: a YouTube quality analysis

“…The results of our analysis on AIDs differ from those of recently published YouTube analyses on other rheumatic diseases like gout or systemic sclerosis where the target audience were mostly patients [ 12 , 15 ]. This might be due to a proportionally smaller number of patients suffering from AID in relation to other rheumatic diseases and the lack of specific patient organizations.…”

“…Videos uploaded by professionals and targeting professionals had a higher GQS compared to private persons or relatives ( p = 0.072). This is also concordant with recent studies [ 12 , 15 , 18 ] and suggests that the source of the videos is important for the quality and reliability of the content [ 15 ]. Therefore, medical societies and experts in the field should focus on this aspect in professional educational initiatives.…”

“…Concerning the GQS for professionals, length of the video was significantly correlated with higher quality ( r = 0.38, p < 0.001). In accordance with that result, previous studies found that videos with high quality had longer video duration [ 14 , 15 , 18 ]. This finding may be related to the fact that longer videos are more detailed and comprehensive than short ones [ 14 ].…”

“…While seeking information, however, patients do not tend to check the uploading source on digital platforms; the viewership and reliability of videos on YouTube are not linked to each other [ 22 ]. Previous studies investigating the quality and reliability of videos available on YouTube in rheumatology found poor or wide variations in the quality of the videos [ 15 , 23 – 26 ]. Zengin et al [ 14 ] found that videos about the side effects of biological therapy in rheumatic diseases had 40.3% high quality and 36.4% low quality.…”

“…The quality of the video’s information was evaluated based on the modified global quality scale (GQS) [ 13 ] used in several studies concerning quality evaluation in YouTube videos [ 12 , 14 , 15 ].…”