IMPE Abstracts

Background: Endocrine conditions like Polycystic Ovary Syndrome (PCOS) are widely discussed on social media, but there is no literature characterizing this information. TikTok is a popular video-sharing social platform avidly used by youth and females. We sought to analyze the quantity and quality of PCOS-related content on TikTok.

Methods: The 200 most-liked TikTok videos under “#PCOS” were analyzed. Metadata was scraped using an Apify web tool. Video content, including creator’s profession, PCOS causes, symptoms, and treatments, was collected by trained coders. Non-relevant videos were excluded. Descriptive analysis was conducted in R to identify potential trends.

Results: A total of 150 videos (509,260,900 views) met inclusion criteria. Some videos were created by medical professionals (dietitians, physician assistants, nurses) (8%, n=12), and alternative practitioners (31%, n=46), while a majority were created by laypeople/patients (61%, n=92). Commonly discussed concerns included infertility/miscarriage (27.3%, n=41), difficulty losing weight (24.7%, n=37), and irregular menstrual periods (22%, n=33) (Fig. 1). Thirty-five percent of videos (n=53) discussed other symptoms that are not routinely associated with PCOS (e.g., period cramps, thyroid issues, fatigue). Only nine percent of videos (n=15) mentioned oral contraceptive pills (OCPs), which is the typical first-line treatment in adolescents with PCOS. Of these, 64.2% (n=9) expressed negative feelings toward OCPs and 35.7% (n=5) discussed stopping use of OCPs due to “hormone imbalances”, “weight gain”, and “poor gut health.” Suggested alternatives to OCPs included “natural healing” and “traditional Chinese medicine.” Fourteen percent of videos (n=21) discussed experiences with conventional medicine, with 81% (n=17) describing negative experiences with physicians being "dismissive, judgmental, unhelpful, sexist, and insensitive".

Discussion: Millions of views and shares suggest that there is a sizable online community on TikTok to support those suffering from PCOS. However, with very few medical professionals in this space, the content is often based on anecdotes and opinions rather than scientific evidence. The rhetoric surrounding conventional treatment options is largely negative, with most videos expressing mistrust in allopathic medical practices and recommending alternative remedies instead. This exposes impressionable youth to misinformation about PCOS and may lead to skepticism about medical management and recommendations from their healthcare providers. The frequency of emotional reactions in these videos indicates the need for physicians to be more aware of the discourse surrounding PCOS on social media and be more empathetic to patient perspectives. Our research suggests the potential for social media platforms to be used for patient education.