Examining the Influence on Perceptions of Endometriosis via Analysis of Social Media Posts: Cross-sectional Study (Preprint)

BACKGROUND Social media platforms, such as Facebook and Instagram, are increasingly being used to share health-related information by “influencers,” regular users, and institutions alike. While patients may benefit in various ways from these interactions, little is known about the types of endometriosis-related information published on social media. As digital opinion leaders influence the perceptions of their followers, physicians need to be aware about ideas and beliefs that are available online, in order to address possible misconceptions and provide optimal patient care. OBJECTIVE The aim of this study was to identify and analyze frequent endometriosis-related discussion topics on social media in order to offer caregivers insight into commonly discussed subject matter and aspects. METHODS We performed a systematic search using predefined parameters. Using the term “endometriosis” in Facebook’s search function and a social media search engine, a list of Facebook pages was generated. A list of Instagram accounts was generated using the terms “endometriosis” and “endo” in Instagram’s search function. Pages and accounts in English with 5000 or more followers or likes were included. Nonpublic, unrelated, or inactive pages and accounts were excluded. For each account, the most recent 10 posts were identified and categorized by two independent examiners using qualitative content analysis. User engagement was calculated using the numbers of interactions (ie, shares, likes, and comments) for each post, stratified by the number of followers. RESULTS A total of 39 Facebook pages and 43 Instagram accounts with approximately 1.4 million followers were identified. Hospitals and medical centers made up 15% (6/39) of the Facebook pages and 5% (2/43) of the Instagram accounts. Top accounts had up to 111,600 (Facebook) and 41,400 (Instagram) followers. A total of 820 posts were analyzed. On Facebook, most posts were categorized as “awareness” (101/390, 25.9% of posts), “education and research” (71/390, 18.2%), and “promotion” (64/390, 16.4%). On Instagram, the top categories were “inspiration and support” (120/430, 27.9% of posts), “awareness” (72/430, 16.7%), and “personal story” (72/430, 16.7%). The frequency of most categories differed significantly between platforms. User engagement was higher on Instagram than on Facebook (3.20% vs 0.97% of followers per post). On Instagram, the highest percentage of users engaged with posts categorized as “humor” (mean 4.19%, SD 4.53%), “personal story” (mean 3.02%, SD 4.95%), and “inspiration and support” (mean 2.83%, SD 3.08%). On Facebook, posts in the categories “awareness” (mean 2.05%, SD 15.56%), “humor” (mean 0.91%, SD 1.07%), and “inspiration and support” (mean 0.56%, SD 1.37%) induced the most user engagement. Posts made by hospitals and medical centers generated higher user engagement than posts by regular accounts on Facebook (mean 1.44%, SD 1.11% vs mean 0.88%, SD 2.71% of followers per post) and Instagram (mean 3.33%, SD 1.21% vs mean 3.19%, SD 2.52% of followers per post). CONCLUSIONS Facebook and Instagram are widely used to share endometriosis-related information among a large number of users. Most posts offer inspiration or support, spread awareness about the disease, or cover personal issues. Followers mostly engage with posts with a humoristic, supportive, and awareness-generating nature. Health care providers should be aware about the topics discussed online, as this may lead to an increased understanding of the needs and demands of digitally proficient patients with endometriosis.