YouTube as a source of information on autosomal dominant polycystic kidney disease: A quality analysis

Abstract

Introduction Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disease in adults. As a social media platform, YouTube has tremendous potential to both support and hinder public health efforts. The aim of this study was to assess the reliability and quality of the most viewed English-language YouTube videos on ADPKD. Methods A YouTube search was conducted on 3 August 2023, using the keyword ADPKD disease and the top 200 videos were analyzed for relevance. Videos in the “Short” category that were duplicates, were not in English, were not audio or visual, and contained advertisements were excluded. Two reviewers divided the 159 included videos into groups based on their source and content. Results In 106 (66.7%) of the 159 videos, general information about the disease was given, 58 (36.5%) discussed medical treatment, 11 (6.9%) discussed surgical treatment, 30 (18.9%) included patient images and radiological images, and eight (5%) discussed the genetic and pathological features of the disease. Additionally, 16 (10.1%) videos fell into the “other” category. According to the Journal of the American Medical Association, Quality Criteria for Consumer Health Information and Global Quality Scale scoring systems, videos uploaded by health associations and foundations received the highest scores (3 (1–4), 54 (28–70), 4 (1–5), respectively). Conclusion Academic institutions and other official health organizations such as Health Associations/Foundations need to use YouTube more effectively to disseminate accurate, reliable and useful health-related information to society.