Evaluating the quality and reliability of youtube videos about phenylketonuria

Abstract

Phenylketonuria (PKU) is a congenital metabolic disorder characterized by defective phenylalanine metabolism, leading to neurotoxicity when untreated. Early detection through newborn screening and timely dietary intervention can ensure normal intellectual development. YouTube is a widely used source for health-related content, but the quality of information remains variable. The objective of this study is to evaluate the quality and reliability of YouTube videos related to PKU using validated scoring tools. This cross-sectional study was conducted on December 30, 2024. A YouTube search using the keyword "phenylketonuria" yielded 150 videos, of which 104 met the inclusion criteria. Video parameters including number of views, likes, duration, and content type were collected. Reliability was assessed using the Journal of the American Medical Association Benchmark Criteria and the modified DISCERN questionnaire. Quality and accuracy were evaluated using the Global Quality Score. Statistical analyses were performed to determine the relationships between video characteristics and evaluation scores. Of the analyzed videos, 45% were animated and 68% were uploaded by healthcare professionals. The median number of views was 1064 (range: 12-806,000) and the median view ratio was 0.68 (range: 0-245.36). Significant associations were found between the year of upload and view ratio (P = .012), and between continent and both view ratio (P = .045) and daily views (P = .003). Likes-per-view differed significantly by country (P < .001). According to the Global Quality Score, 56% of videos were of medium quality, with the highest scores observed in videos from professional organizations and academic sources. Journal of the American Medical Association assessment showed that 58.3% of videos contained sufficient information. Modified DISCERN questionnaire revealed that 46.6% of videos had poor reliability. The majority of PKU-related YouTube videos analyzed were of low to moderate quality and reliability. Given the impact of such content on patient decision-making, healthcare authorities should take an active role in producing and promoting high-quality digital health content.