(128) Understanding TikTok as a Source of Medical Information about Endometriosis

Background: With the widespread use of TikTok, young girls and adolescents increasingly seek medical information on this platform before presenting for medical evaluation. This study aims to systematically assess the content on TikTok pertaining to endometriosis.

Methods: Using the term “endometriosis” on 2/22/23, the top 50 TikTok videos were viewed by three independent raters. General characteristics, content categories, and quality of the health information as determined by the DISCERN tool, were compiled. Adequate interrater reliability by weighted kappa supported use of majority rules methodology to norm reviewer results.

Results: Of 50 videos, 72% were posted by lay people, 12% by doctors, 10% by organizations and 6% by other medical providers. Videos posted by lay people had 1.9-2.9x the views, likes, shares and comments compared to videos posted by doctors.

72% of the videos featured information about symptoms, 50% discussed management, 26% mentioned disease outcomes, 18% discussed diagnosis and 2% reported risk factors.

Videos featuring a personal vignette (72%) had 4.8x the total views (60M vs. 12M), 7x the total likes (4.5M vs. 606K), 3.4x the total shares (33M vs. 9.6M), and 6.9x the total comments (44K vs. 9K) compared to videos without. Only 1 video posted by a medical doctor featured a personal story, compared to 34 of 36 videos posted by lay people.

With regards to quality of information, content was relevant (3.0/5), and the aims and achievement of aims were considered high (3.73/5 and 3.85/5). However, sources of information were missing, content was biased, and few videos discussed possible gaps in knowledge.

Conclusions: As our young girls and adolescents increasingly turn to social media for medical information, it is imperative for the PAG community to have a deeper understanding of TikTok’s representation of endometriosis as it is a powerful motivator of patient behavior.