Evaluating Interstitial Cystitis Content on TikTok: A Cross-sectional Analysis

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a common, stigmatizing, and poorly understood condition. With more people turning to TikTok for health information, it is important to assess the quality of IC/BPS-related content on this platform, which has not been studied to date.

The objectives of this study were to evaluate how IC/BPS is discussed on TikTok, assess the quality of the information provided, and determine the utility of these videos as patient education tools.

We conducted a cross-sectional, content analysis study using a web scraping software to identify the top 100 most-played TikTok videos under 4 IC/BPS-related hashtags. A codebook was developed to document video qualities and content. The DISCERN scale was applied to evaluate health information quality, and the Patient Education Materials Assessment Tool (PEMAT) was used to evaluate understandability/actionability.

The top 100 videos had a median of 71,400 plays, 116 comments, and 9 seconds duration. Half were created by patients, and half by health care workers. Most shared personal experiences with neutral or negative tones. More videos demonstrated distrust in health care than trust. Two thirds mentioned symptoms, and nearly half mentioned treatments. Videos scored poorly on the DISCERN scale and the Actionability PEMAT, but highly on the Understandability PEMAT.

TikTok is a platform where patients actively engage with IC/BPS-related content. While videos are widely accessible and understandable, they often lack high-quality and actionable information. Clinicians should consider further engaging with TikTok to improve the accuracy, quality, and utility of educational content on IC/BPS.