Bladder Chatter: Assessment of Interstitial Cystitis Video Quality on TikTok

INTRODUCTION: Interstitial cystitis or painful bladder syndrome (IC/PBS) is a common yet poorly understood and inadequately addressed health condition. With the increasing prevalence of social media use, more people are turning to social media platforms for health information. TikTok, a social media platform featuring short-form video, has increased in popularity in the past few years. Prior research has shown mixed results regarding the quality, reliability, and accuracy of health information on TikTok. Understanding what type and quality of health information on TikTok could better prepare physicians for patient interactions. No studies to date have explored the way IC/PBS is discussed on TikTok. OBJECTIVE: This study aimed 1) to determine how IC/PBS is discussed on social media by reviewing relevant TikTok videos, 2) to assess the quality of the information in TikTok videos related to IC/PBS, and 3) to assess the quality of these videos as patient education tools. METHODS: Using a web scraping software, we identified the top 100 most played videos from TikTok for each of the following hashtags: #bladderpain, #bladderpainsyndrome, #intersticialcystitis, #interstitialcystisis (common misspellings). We selected the top 100 most played videos. A codebook was developed in advance, including variables to describe video qualities and content. Two standardized scales were included: a modified 5-point DISCERN scale to evaluate the information quality and the Patient Education Materials Assessment Tool (PEMAT) to evaluate the understandability and actionability of each video. Each coder coded the entire data set, and a third member of the research team arbitrated differences. RESULTS: The top 100 TikTok videos about IC/PBS had a median of 70,850 plays, 114 comments, and 9-second duration. Most videos referred to a personal experience (67%) and had a neutral (45%) or negative (42%) tone. 17% of the videos demonstrated a distrust in healthcare while only 6% demonstrated trust in healthcare. 65% of the videos mentioned IC/PBS symptoms, and 43% mentioned treatment options, including but not limited to: diet, pain management, alternative remedies, surgery, and pelvic floor physical therapy. Of the videos that made scientific claims or promoted public health information (17% of total videos), 76.5% were majority accurate. The videos scored low on the DISCERN assessment of health information quality (averaging a score of 1.6 out of 5 points). The videos scored highly on the PEMAT Understandability Assessment (average 73.8%), and low on the PEMAT Actionability Assessment (average 24%) (Figures 1 and 2). CONCLUSIONS: TikTok is a commonly used source of health information for patients with IC/PBS. These videos frequently identify symptoms and treatment options that may help patients address their own health needs and advocate for themselves in healthcare settings. The videos mainly project neutral or negative tones and some expressed a general distrust of healthcare. When scientific claims were made, most were accurate; however, the videos scored poorly overall on a health information quality assessment. The videos were highly understandable, although many did not offer actionable steps for patients, making them overall poor patient education materials (Table 1).