Following Fibroids: An Analysis of Social Media Narratives

Many patients with uterine fibroids turn to social media for information, where fibroid-related content has grown substantially. To effectively address misconceptions and deliver high-quality, patient-centered care, physicians should be aware of the online information their patients encounter. This study analyzes fibroid-related content on social media to better understand the information being consumed.

The top 100 "liked" posts using "#fibroids" were identified on Facebook, Instagram, and TikTok using a third-party web scraping tool. Post demographics and content were assessed by two reviewers and were included if they were in English and related to uterine fibroids. Information quality was measured with the DISCERN instrument; understandability and actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT).

A total of 300 social media posts were analyzed (100 per platform) from October 2019 to June 2024. TikTok posts had the highest engagement, with a median of 23,150 "likes" and 510,800 views. Content themes included promotional (51%), diet/supplements (41%), awareness (36%), and educational (33%). Alternative remedies were the most frequently mentioned treatment (46%), followed by surgery (29%) though with low mention of minimally invasive procedures (6.7%). DISCERN scores indicated poor information quality (mean 28.4), while PEMAT scores showed high understandability (mean 94.9%).

Social media contains a large volume of mostly low-quality fibroid-related content and especially lacks representation of minimally invasive surgical options. Improved efforts are needed to promote accurate, evidence-based information online.