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 32% of its users under the age of 20, and up to 60% female. Its ease of content creation and engagement-focused algorithm often lead to the spread of misinformation, potentially harming patients. The main objective of this study was to assess the content, reliability, and overall reach of TikTok videos made by medical professional creators vs. other creators about polyendocrine metabolic ovarian syndrome (PMOS), previous known as polycystic ovarian syndrome (PCOS).

A TikTok scraper was used to collect the top 250 TikTok videos using the hashtag #PCOS from 2020-2023 for this cross-sectional study. Each video was by two independent reviewers to evaluate variables regarding self-reported credentials of content creator, video statistics, and video content. The modified DISCERN scale was then used to rate educational quality of each video. This study was Institutional Review Board (IRB) exempt.

Of the top 243 videos, 73% were from the general public, 17% from dieticians, and 10% from medical professionals. The general public and dieticians were more likely to report having PMOS/PCOS (78% and 60%) compared to medical professionals (22%) (P<0.001). Weight gain, hirsutism, and acne were the most common symptoms mentioned by creators. Dieticians more frequently highlighted sugar cravings and fatigue compared to other creators (P=0.02 and P<0.001, respectively). Medical professionals were more likely than others to mention acne and polycystic ovaries (P=0.045 and 0.004, respectively). The average DISCERN score was 1.3/5, with medical professionals' videos scoring the highest (1.7) (P=0.002).

PMOS/PCOS is a well-known medical condition which is frequently misunderstood outside of the gynecologic community. This study finds that the majority of creators lack a medical background and frequently focus on symptoms which are not necessarily attributable to PCOS. There was overall no difference in the reach of the different types of creators, though there was a significantly smaller proportion of medical professionals compared to others. Since social media is becoming increasingly used as a source of information, especially for younger generations, medical professionals should consider investing time in understanding these platforms which can prevent the spread of misinformation.