The Role of YouTube in Shaping Patient Perceptions of Crohn’s Disease: A Double-Edged Sword

Background: This study explores how YouTube videos from both academic and private organizations influence Crohn’s disease understanding. Academic outlets typically provide information that is both evidence-based and scientifically validated, whereas private entities might not undergo stringent quality checks and may focus more on anecdotal or commercial material. Given YouTube’s extensive reach, the lack of a formal editorial oversight could lead to the spread of misinformation. Such variations in the quality and trustworthiness of content can have a notable impact on patient education and treatment results for Crohn’s disease. Methods: We performed a YouTube search using the term “Crohns” to find videos pertinent to the subject. We excluded videos that were not in English, were irrelevant, or had no audio. Various characteristics of the videos, such as view count, likes, dislikes, comments, and the type of source (either academic or private), were recorded. The videos were then categorized as either reliable or unreliable based on the scientific validity of their content. To assess video quality, we utilized evaluation tools like DISCERN, Global Quality Score (GQS), and the Patient Education Materials Assessment Tool (PEMAT). The uniformity among seven researchers in applying these tools was gauged using intraclass correlation. Results: We examined 21 videos from YouTube search results, with 12 being academic (57.2%) and 9 private (42.8%). Academic videos outperformed private videos in terms of DISCERN scores (33±5.5 compared to 24.64±4.07, p=0.018). They also scored higher in Global Quality (3.6 vs. 2.6, p=0.021) and PEMAT (4.4 vs. 2.9, p=0.032). Additionally, there was a positive correlation between academic videos and metrics like the number of likes (Odds Ratio: 0.55, P< 0.001), subscribers (Odds Ratio: 0.78, P< 0.0001), and views (Odds Ratio: 1.32, P< 0.001). Conclusions: Our research uncovers notable gaps in the quality of YouTube content related to Crohn’s disease. Videos from academic sources consistently scored higher in terms of accuracy and trustworthiness, as evidenced by superior DISCERN, Global Quality Score, and PEMAT evaluations. Additionally, there was a positive association between academic content and user engagement factors such as likes, subscribers, and views. These results underscore the importance of guiding patients toward information backed by academic research to reduce the potential for misinformation.