Bladder exstrophy on YouTube: an evaluation of quality, actionability, and user engagement

PURPOSE: To assess the quality and engagement of bladder exstrophy content on YouTube using validated assessment tools, with the goal of identifying gaps in accessible, high-quality online education. These findings also have broader implications for the interplay of online information and rare conditions. METHODS: We reviewed the first 300 YouTube videos relevant to the term "bladder exstrophy" published prior to March 2025. Video quality was assessed using the Patient Education Materials Assessment Tool (PEMAT) and JAMA benchmark criteria. Engagement (views, likes, comments), presenter credentials, and targeted audience were extracted. Spearman correlation coefficients were used to examine the relationship between viewer engagement and quality scores. RESULTS: 133 videos met inclusion criteria. Academic institutions produced 60% of videos. The median video length was 5 min with a median view count of 204. Patient-created videos had the highest Video Power Index (VPI), however this was not statistically significant (p = 0.11). Median understandability (PEMAT-V) was high (89), while actionability (PEMAT-A) was low (0). Academic videos had significantly higher PEMAT-V (p = 0.002) and JAMA benchmark scores (p < 0.001) compared to patient, layperson content. No significant correlations were found between video quality scores and user engagement metrics. CONCLUSION: Content on bladder exstrophy garners limited viewership and engagement but remains an important educational resource. Videos produced by academic institutions demonstrated the highest quality scores, however, lacked actionable guidance. Higher quality was not associated with increased engagement, highlighting a critical gap in the availability of educational, user-friendly videos that support both understanding and anticipatory guidance for the management of bladder exstrophy.