(7) A TikTok Take on PCOS

Background: TikTok is a dominant social media platform with appeal to a relatively young consumer base. An estimated 1 in 4 of its users are under age 20 and up to 57% of users are female. The platform is commonly used by viewers to seek information regarding medical conditions. However, given its ease of content creation and algorithm to increase engagement, the platform is also rife with misinformation, which can cause harm to patients. The main objective of this study was to assess the content and reliability of TikTok videos made by medical professional creators versus other creators about polycystic ovarian syndrome (PCOS).

Methods: A TikTok scraper was used to collect the top 250 TikTok videos using the hashtag #PCOS from 2020-2023. Each video was analyzed by two independent reviewers. Data collected included self-reported credentials of content creator and video content (number of symptoms listed, characterization of symptoms). The modified DISCERN scale was used to rate educational quality of each video. This study was IRB exempt.

Results: A total of 243 videos were included for analysis; 7 videos were deleted by the time of analysis and excluded. Most videos were created by laypeople (73%), followed by dieticians (17%), and medical professionals (including physicians, advanced practitioners, and nurses) (10%). Laypeople and dieticians were more likely to identify as having PCOS (78% and 60%, respectively) compared to medical professionals (22%) (p < 0.001). The most common mentioned symptoms associated with PCOS were weight gain (29%), hirsutism (19%), and acne (16%). Dieticians were more likely to mention sugar cravings (19%) and fatigue (33%) compared to other creators (p=0.023 and < 0.001, respectively). Medical professionals were more likely than other creators to mention acne (35%) (p=0.045). Medical professionals were also more likely to mention polycystic appearance of the ovaries (26%) as part of diagnostic criteria than other creators (p=0.004). The average DISCERN score overall was 1.3/5. This score was highest among videos created by medical professionals (1.7), followed by dieticians (1.3). Videos created by laypeople were more likely to have lower DISCERN scores compared to others, on average 1.2/5 (p=0.002).

Conclusions: PCOS is frequently misunderstood outside of the gynecologic community and subject to misinformation. This study finds that most creators lack a medical background and frequently focus on symptoms which are not necessarily attributable to PCOS. 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 to combat the spread of misinformation.