Study finds majority of YouTube videos about scleroderma are helpful and educational


A new survey of the educational value of YouTube videos on scleroderma found that the majority of these videos functioned as “important educational sources” for patients and doctors, although investigators added that patients should be aware of the information. misleading and advertisements presented in some of the websites available. contents.

Generally speaking, the clinical signs and symptoms of scleroderma are still not recognized by healthcare professionals and patients. As such, the disease has often been confused with other illnesses and scleroderma-related changes have gone unnoticed.

Recent data has shown that almost 80% of internet users access health information online, with YouTube being a particularly popular source of health information. Despite this, the quality and reliability of health-related videos on the site has been a big concern for healthcare providers.

For this reason, an investigative team led by Cagri Unal-Ulutatar, PhD, of Sancak Medical Center in Istanbul, Turkey, sought to determine the reliability and quality of YouTube videos with respect to rheumatic diseases such as scleroderma.

This cross-sectional study included search terms such as “scleroderma” and “systemic sclerosis” and was conducted on March 15, 2022.

Unal-Ulutatar and his colleagues screened 200 videos, 115 of which met the inclusion criteria and were thoroughly analyzed. Videos in English containing information on the epidemiology, pathogenesis, clinical features, diagnosis and treatment of the disease have been included. Duplicates and non-English videos were excluded.

Investigators recorded the number of views, view ratio, duration, number of likes/dislikes, comments/comments ratio, time elapsed since upload, subscribers and upload source for each eligible video before classify them into 7 groups: doctors, academic institutions/professionals. organizations, health-related websites, patients, non-physician healthcare professionals, television programs and independent users.

From there, they used a modified version of the DISCERN tool, which had 5 questions instead of the usual 16. The reliability of the videos was assessed with the modified DISCERN, and the answers to the questions were yes/no, which were scored 1. and 0, respectively.

Questions included “Are the objectives clear and achieved? », « are reliable sources of information used », « is the information provided balanced and impartial? “Are additional sources of information listed for patient reference?” uncertainty/controversy mentioned? »

The average length of the 115 videos included in the study was 21.9 minutes, while the average number of views was 18,107.6.

Most videos (42.6%) were uploaded by academic institutions or professional organizations, and the content of 55 videos (47.8%) related to the clinical features of systemic sclerosis. Most of these videos (56.5%) targeted patients, while 41.7% were aimed at healthcare professionals.

Of these videos, investigators deemed 84 (73%) of them “useful”, while 20 (17.4%) were “misleading” and 11 (9.6%) were patient experiences.

Notably, of the misleading videos, 7 (35%) were uploaded by health-related websites, 5 (25%) by TV programs, 4 (20%) by academic institutions/professional organizations, 2 (10%) by patients and 1 (5%) by physician and independent users, while most useful videos were uploaded by academic institutions/professional organizations (n=45, 53.6%), health-related websites (n=22, 26.2%) and doctors (n=13, 15.5%).

Although the majority of videos featured in the study were of good quality, the researchers highlighted the need for quality filtering of scleroderma content on YouTube for the benefit of patients and healthcare professionals.

“Information targeting physicians was mostly of high quality,” the team wrote. “On the other hand, videos directed at patients could be misleading and could include advertisements that could be a vain hope.”

The study, “YouTube as a source of information on systemic sclerosis”, was published online in the International Journal of Rheumatic Diseases.


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