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

Polycystic ovarian syndrome (PCOS), a common endocrine and metabolic disorder affecting between 8 and 13% of reproductive aged women, is often diagnosed in adolescence with the presence of menstrual irregularities and hyperandrogenism.1 It can be associated with insulin resistance, metabolic syndrome, and anovulatory infertility. Various criteria have been proposed for the diagnosis of PCOS, however the pathophysiology remains poorly understood, leading to confusion for both providers and patients.2 Provider-led counseling about presumed PCOS etiology, metabolic effects, fertility implications, and symptom management is often limited by time and infrequent interactions. Patients express frustration over what they perceive as gaps in their medical providers’ knowledge of PCOS and dismissal of their concerns3, 4, 5, 6; only 15.6% of women globally report satisfaction with the information about PCOS shared by medical providers at the time of their diagnosis.7

The internet is highly utilized by women, especially adolescents, to learn about reproductive health issues such as PCOS, including symptoms, treatment options, and long-term complications.5,8 In contrast to traditional counseling, the internet is favored by these women because of its privacy, accessibility, convenience, and ability to provide a sense of control over the information they receive, however limited research exists about the content of the information.8,9 Through online social platforms, women exchange advice and seek connections to feel less alone in their PCOS concerns.5,8,9

Social media platforms are varied in regards to format and type of media content, account verification, algorithmic targeting for consumers, and policy for health misinformation - a unique setting for health information dissemination. Teenagers in particular are avid users of social media - 67% reported using TikTok.10 The social media landscape is constantly changing with multiple platforms available, however three platforms have become popular with PCOS related content: Instagram, TikTok, and Reddit (Table 1). While Instagram and TikTok are primarily conducive to one-way communication between an influencer and an audience, Reddit provides a collaborative forum designed for users to engage in discussions and solicit advice.

Health misinformation is highly prevalent on social media across a variety of medical topics, with studies on noncommunicable diseases finding misinformation rates of 40%.11 Studies examining online misinformation about reproductive health are scarce, although research on endometriosis, HPV vaccination, abortion has found concerning amounts of false or misleading claims.12, 13, 14 Patients and providers express concerns about the reliability of the PCOS information found online, which may perpetuate myths and lead women to try alternative treatments not supported by research.3,9 As seen in Table 1, platforms’ health misinformation policies are varied, and enforcement of such policies can be limited to a few health conditions. Additionally, some content creators are motivated to post by conflicts of interest, such as promoting supplements or personal health coaching, which may incentivize the sharing of unreliable information. A platform's content recommendation algorithms and limitations in knowledge of PCOS pathophysiology create information echo chambers that allow PCOS content to reach an audience of unprecedented size, without mechanisms to verify its reliability, in stark contrast to more “traditional” internet sources of health information, such as online textbooks or a hospital webpage. We aim to assess the extent, engagement, and content of PCOS related content on these platforms. We hypothesize that higher engagement occurs when there is a conflict of interest for the content creator, illustrating that information being shared widely might not be in the best interest for a patient with PCOS.

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