Is YouTube useful as a source of information for Sjögren's syndrome?

To quantitatively and qualitatively assess the characteristics of YouTube videos dealing with Sjögren's syndrome.

A comprehensive electronic search was performed for 'Sjögren's syndrome' in YouTube. After excluding duplicates, irrelevant videos, and non-English-language domains, 70 videos were included for analysis. Videos were classified as useful, misleading, or personal experience. The overall quality of videos was scored according to the Global Quality Scale (GQS). Useful videos were assessed for reliability and comprehensiveness based on two 5-point scales. Key points of the misleading videos were explored and patients' personal experiences were further investigated.

Thirty-six videos (51.4%) were classified as useful, 6 (8.6%) as misleading, and 28 (40%) as patient's personal experience. Independent users tend to upload videos with personal experience, while university channels/professional organizations share useful videos with evidence-based information. Significant difference was observed in GQS among useful, misleading videos, and patient's experiences. The mean reliability, comprehensiveness, and GQS scores of useful videos were 2.5 (s.d.:1.2), 2.6 (s.d.:1.4), and 3.4 (s.d.:1.0), respectively, whereas only six videos (16.7%) were rated as complete vis-à-vis content. The most frequently misleading topics were etiology and treatment.

Specialists should refer their patients to validated e-information resources and actively participate in the development of video-sharing platforms.