A TikTok take on polycystic ovarian syndrome: a cross-sectional study

TikTok has rapidly become a dominant social media platform, particularly popular among younger users, with 18% of users under the age of 24, and up to 50% female ( 1 ). The platform is increasingly used to seek medical information. However, its ease of content creation and engagement-focused algorithm often lead to the spread of misinformation, potentially harming patients ( 2 , 3 ). Polyendocrine metabolic ovarian syndrome (PMOS), previously known as polycystic ovarian syndrome (PCOS) is a common endocrine disorder affecting many women of reproductive age, characterized by particular reproductive, metabolic, dermatologic, and psychologic features, including irregular menstrual cycles, hyperandrogenism, and polycystic ovaries ( 4 , 5 ). As PMOS is a newer term that has not yet percolated through the majority of social media, hereafter in this manuscript, this condition will continue to be referred to as PCOS. Accurate information about PCOS is crucial for proper management and understanding of the condition, but the portrayal of PCOS on platforms like TikTok may be inconsistent and misleading ( 6 ). Previous studies on the discussion of other gynecologic topics on TikTok have shown low educational value and frequent negative feelings towards the medical system ( 2 , 3 , 6 ). For these other conditions (including endometriosis and intrauterine device insertion), even content from medical professionals rated low on educational content ( 2 , 3 ). A 2024 study regarding discussion of PCOS, specifically, found relatively higher educational content from medical professionals compared to previous studies on other gynecologic topics ( 6 ). This study evaluates the overall quality of PCOS-related TikTok videos, comparing content from medical professionals with that from non-medical creators. We aim to clarify the educational content of videos produced by different content creators, seek to understand how different types of creators present PCOS-related information, and assess the implications for viewers seeking reliable health information. We present this article in accordance with the STROBE reporting checklist (available at https://gpm.amegroups.com/article/view/10.21037/gpm-2025-1-56/rc ).

We conducted a content analysis of the top 250 TikTok videos tagged with #PCOS from 2020 to 2023 using a TikTok scraper for this cross-sectional study ( 7 ). PMOS was not yet recognized as a term at the time of this study so was not used in the search criteria. Two independent reviewers evaluated each video for creator credentials, video statistics (number of comments, likes, shares), content accuracy, and recommended treatments. Content accuracy was evaluated based on the characterization of symptoms purported to be related to PCOS. DISCERN, originally developed to assess the validity and reliability of written information, has been adapted into a 5-point scale for evaluating video content quality ( 2 , 3 , 6 , 8 ). This modified DISCERN scale ( Table 1 ) was utilized to assess the educational quality of each video, evaluating aspects such as clarity and reliability ( 8 ). The sample size chosen was similar to other studies on social media as this is focused on the top videos most likely to be seen by viewers. This study was Institutional Review Board (IRB) exempt. 1 point is given for each “yes” and 0 points for each “no” answer. Descriptive statistics were used to summarize the data. We performed Chi-squared and two-tailed T-tests to determine statistical significance of categorical and continuous variables, respectively. We considered a p-value less than 0.05 significant. Statistical analysis was performed using SPSS Version 29 (IBM, Armonk, NY).

Of the top 250 videos, 243 were included for analysis; 7 were excluded due to deletion prior to data collection. Among the 243 videos, 73% were created by the general public, 17% by dieticians, and 10% by medical professionals (including physicians, advanced practitioners, and nurses). The general public and dieticians were more likely to self-report having PCOS (78% and 60%, respectively) compared to medical professionals (22%) (P<0.001). Videos had 1,796,384 views and 141,077 likes on average. Videos by the general public had more average views [2,008,727] and likes [166,115] than videos by dieticians (1,196,405 views and 67,650 likes) and medical professionals (1,248,648 views and 78,201 likes), though these differences were not statistically significant. Over half (51%) of videos recommended specialized diets (26%), exercise regimens (20%), and/or supplements (21%), with no significant difference based on the creator’s profession. The most common mentioned symptoms were weight gain (29.22%), hirsutism (19.34%), and acne (16.46%). Dieticians more frequently mentioned sugar cravings (19%) and fatigue (33%) (P=0.02 and <0.001, respectively), while medical professionals were more likely to mention acne (35%) (P=0.045) and the polycystic appearance of ovaries (26%) (P=0.004) ( Figure 1 ). Symptoms associated with PCOS as reported by content creators. PCOS, polycystic ovarian syndrome. The average DISCERN score was 1.3/5, with medical professionals’ videos scoring highest (1.7), followed by dieticians (1.3) and the general public (1.2) (P=0.002).

This study highlights significant differences in the quality of PCOS-related content on TikTok based on the creator’s background. Similar to previous studies, we find that videos by the general public and dieticians offered less accurate and less detailed information compared to those by medical professionals ( 6 ). These non-medical professionals were also more likely than medical professionals to report a personal diagnosis of PCOS and were therefore more likely to mention anecdotal and personal experiences that may lack clinical-relevant evidence. Given the high volume of these videos and creators, this can generate substantial misinformation which can then be further perpetuated by subsequent videos. Medical professionals more commonly discussed PCOS diagnostic criteria from the National Institutes of Health, Rotterdam Consensus, and Androgen Excess Society when discussing symptoms, which are the criteria most used by medical professionals in North America ( 5 ). However, the majority (90%) of videos were created by non-medical professionals. There was no statistical difference in number of views and likes between content creators, but videos made by medical professionals had higher DISCERN scores, indicating greater reliability and educational value. A 2024 study on PCOS-related TikTok videos, found a similar difference in DISCERN scores between medical professionals and non-medical professionals, with reported scores of up to 3.6 for videos created by physicians and 2.0 for videos created by non-physician healthcare providers ( 6 ). In contrast, our study demonstrated a lower DISCERN score of 1.7 for medical professionals compared to previous studies. However, consistent with previous studies find that medical professionals tended to have higher DISCERN scores than non-medical content creators. Other studies related to other gynecologic topics have similarly found low DISCERN scores for medical professions, which may reflect evolving TikTok trends or sampling time period ( 2 ). In our study, over 50% of videos recommending specific diets, exercise regimens, and/or supplements with little to no medical evidence. Horvath et al. reported that only 16% of videos in their cohort on PCOS-related TikTok videos recommended specific diet or exercise regimens and 9% recommended specific teas or herbs ( 6 ). This study’s strengths include evaluation of a large volume of videos from a variety of content creators, as well as critical appraisal of their content. It is limited by its inability to ascertain the goals of the content creators. Comparison between videos and with other studies is difficult due to the constantly changing nature of social media and the inability to verify creator credentials.

Social media content creators are driven by a desire to increase engagement, market specific products, and expand their viewership, not improve public health and well-being. Therefore, it is not surprising that most creators lacked a medical background and frequently focused on symptoms which are not necessarily attributable to PCOS. Unfortunately, this lack of expertise results in dissemination of misleading information, which can impact viewers’ understanding of PCOS. Our findings underscore the critical need for medical professionals to engage more actively on social media platforms. As social media becomes an increasingly common source of health information, particularly among younger audiences, it is essential for medical professionals to understand and leverage these platforms. By doing so, they can help combat the spread of misinformation and provide viewers with reliable and accurate health content. Viewers should also be encouraged to consider creator credentials or professional certification, potential for secondary gain (e.g., commission from advertising certain products), and inclusion of peer-reviewed references when evaluating educational content.

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