YouTube as a source of information on familial Mediterranean fever

Familial Mediterranean fever (FMF) is the most common hereditary autoinflammatory disease. YouTube is a popular video-sharing platform that both patients and healthcare professionals access for medical information. This study aimed to assess the content, reliability, and quality of the YouTube videos related to FMF. To evaluate video quality and reliability, the Global Quality Scale (GQS) and DISCERN tool were used. Based on GQS scores, videos were categorized into high-, moderate-, and low-quality groups. Four groups were identified in terms of usefulness; useful information, misleading information, useful patient opinion, and misleading patient opinion. The video review was conducted on November 26, 2023. Fifty-three videos that met the inclusion criteria were included in our study. Among these videos, 33 (62.3%) were classified as useful information, 14 (26.4%) as misleading information, two (3.8%) as useful patient opinion, four (7.5%) as misleading patient opinion. Regarding quality, 21 (39.6%) videos were rated as low quality, 13 (24.5%) as moderate quality, and 19 (35.8%) as high quality. Videos uploaded by physicians were significantly more likely to contain useful information (p < 0.001), and demonstrated higher GQS and DISCERN scores compared with other groups (p = 0.003, p < 0.001, respectively). In addition to high-quality videos, there are also lower quality videos on YouTube, which may lead to the spread of misleading information. Therefore, physicians and professional organizations in the field of rheumatology need to make progress in publishing videos according to their quality by collaborating with YouTube and other video sharing sites. Furthermore, encouraging these organizations to share accurate and professionally produced videos on YouTube would benefit healthcare professionals, patients, and their families.