Understanding PCOS-Related Content across Social Media Platforms-A Cross-Sectional Analysis

Polycystic ovarian syndrome (PCOS) is commonly diagnosed in adolescence, and information about the condition is often shared online. We aimed to assess the extent, content, and engagement of PCOS-related information across social media platforms.

We performed a cross-sectional content analysis of PCOS-related posts on TikTok, Instagram, and Reddit. Top PCOS posts were collected from TikTok and Instagram (N = 100). Two researchers independently coded all posts using a codebook including symptoms, interventions, and qualities. Logistic regression assessed the relationship between user engagement and creator conflicts of interest. On Reddit, posts from 2020 to 2022 (N = 34,208) were collected. Topic modeling using latent Dirichlet allocation and non-negative matrix factorization (NMF) was applied to discover topics in the textual data.

PCOS content received high engagement across all platforms, with an average of 1.8 million views on TikTok. "Weight" and "Diet" were the most frequently mentioned topics on TikTok and Instagram, and interactions with medical providers were discussed in 30% of posts. A financial conflict of interest was present in 45% of TikTok posts and 89% of Instagram posts. NMF identified 15 coherent topics, including symptoms, interventions, interactions with the medical system, and information-seeking. Reddit posts under "Symptom Management" received the most comments.

PCOS content is present and pervasive across social media platforms, suggesting the ability of information from non-clinician sources to reach and engage with a large population using novel modes of health information sharing. Further studies of this content will allow for a deeper understanding of patient perceptions, misconceptions, and knowledge of PCOS, with the potential to inform patient-centered counseling.