Study Finds Majority of YouTube Videos on Scleroderma Useful, Educational

Cagri Unal-Ulutatar, PhD

A new investigation into the educational value of YouTube videos on scleroderma found that the majority of these videos functioned as “important educational sources” for patients and physicians, though investigators added that patients should be aware of misleading information and advertisements featured in some of the available content.

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

Recent data has shown that nearly 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 have been of great concern to health care providers.

Because of this, an investigative team led by Cagri Unal-Ulutatar, PhD, of the Sancak Medical Center in Istanbul, Turkey, sought to determine the reliability and quality of YouTube videos as they relate to rheumatic disease such as scleroderma.

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

Unal-Ulutatar and colleagues screened 200 videos, 115 of which met the inclusion criteria and were extensively analyzed. Vidoes in English that contained information regarding the epidemiology, pathogenesis, clinical features, diagnosis, and treatment of the disease were included. Duplicates and non-English videos were exlcluded.

Investigators recorded the number of views, view ratio, duration, number of likes/dislikes, comments/comments ratio, time since upload, subscribers, and source of upload for each eligible video before categorizing them into 7 groups: physicians, academic institutions/professional organizations, health-related websites, patient, non-physician healthcare professionals, TV program, and independent users.

From there, they utilized a modified version of the DISCERN tool, which featured 5 questions as opposed to the typical 16. The reliability of videos were assessed with the modified DISCERN, and the answers to questions were yes/no, which were scored as 1 and 0, respectively.

The questions included “are aims clear and achieved?”, “are reliable sources of information used”, “is the information provided balanced and unbiased?”, “are additional sources of information listed for patient reference?”, and “any areas of uncertainty/controversy mentioned?”.

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

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

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

Notably, among 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 a physician and independent users, while most of the useful videos were uploaded by academic institutions/professional organizations (n = 45, 53.6%), health-related websites (n = 22, 26.2%), and physicians (n = 13, 15.5%).

Despite a majority of the videos featured in the study showing good quality, investigators emphasized the need for quality filtering of scleroderma content on YouTube for the benefit of patients and healthcare professionals.

“The information targeting physicians was mostly of high quality,” the team wrote. “On the other hand, the videos addressing patients might be misleading and could include advertisements that might 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.