Introduction and hypothesis: Seeking health information online has drastically increased. As primary bladder pain syndrome (PBPS) is a condition that has no definitive diagnosis and treatment protocol, patients may seek answers on YouTube. We aimed to evaluate the role of the videos related to PBPS hosted on YouTube.
Methods: We searched PBPS-related YouTube videos using the keywords "primary bladder pain syndrome," "painful bladder syndrome," and "interstitial cystitis." The videos not in English, not relevant, or that do not contain audio were excluded. The characteristics of the videos were collected. The videos were primarily classified as reliable and nonreliable based on the scientifically proven accurate information they contained. The overall quality of the videos was assessed by DISCERN and Global Quality Score (GQS). Intraclass correlation was used to calculate the level of agreement between the two investigators on DISCERN and GQS values.
Results: Of the 300 videos, 175 were excluded. A total of 62 (49.6%) videos were considered reliable and 63 (50.4%) nonreliable. Only video lengths differed statistically in favor of reliable videos (p < 0.001). DISCERN and GQS values were higher in the reliable videos group (p < 0.001 for each). The number of views, likes, dislikes, and comments were slightly lower in the videos uploaded from universities/nonprofit physicians or professional organizations than other groups.
Conclusions: Although about half of the videos are reliable, most are long and are medical lectures, from which it is difficult for nonhealth professionals and patients to obtain information. On the other hand, most of the videos that patients can follow more easily consist of nonreliable video groups that lack accuracy, detail, and factual content. Therefore, the relevant associations with experts should prepare concise videos containing correct and up-to-date information.
Keywords: Internet; Interstitial cystitis; Painful bladder syndrome; Primary bladder pain syndrome; YouTube.
© 2022. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.