Endometriosis on TikTok: Evaluating social media misinformation and the role of healthcare professionals

Abstract

TikTok is often the first source teens and young adult patients turn to for medical information, a short-form social media video application known to promote videos with inaccurate information. The primary goal of this study was to characterize popular endometriosis misinformation found on TikTok, with the secondary goal of describing attitudes surrounding endometriosis on TikTok so that physicians can be knowledgeable about the content available on the internet, and be prepared when patients talk about endometriosis misinformation. The top 100 videos under the three most popular endometriosis search terms were assessed for misinformation in four categories: incorrect causes, incorrect symptoms, incorrect treatment, and other incorrect information. Non-English, inaudible, duplicated, or irrelevant videos were excluded from analysis. Videos were analyzed until 100 valid videos were identified in each search term. Metadata was collected, including whether the video was created by a physician or non-physician and attitudes toward endometriosis. Chi squares, Fisher’s Exact Tests, and Mann–Whitney U tests were performed as appropriate. Of total, 298 videos met the eligibility criteria for review. Fifty videos were created by individual physicians and 248 were created by non-physicians. Overall, out of 298 videos, 69 videos (23%) had incorrect or misleading information about causes, treatment, symptoms, or information about endometriosis. Only 1% of the analyzed videos discussed medication management other than COCPs. Nonphysician sources were associated with negative attitudes ( p < 0.003). Nonphysician videos were more likely to contain misinformation in at least one category, compared to physician videos ( p < 0.0008). Despite the greater volume of non-physician videos, those created by physicians were more likely to be shared. Misinformation from non-physician sources was associated with positive/neutral attitudes toward endometriosis and treatment ( p < 0.00002). This study reveals that TikTok hosts a high volume of endometriosis misinformation, especially about endometrosis treatments. Popular TikTok misinformation tends not to reflect traditional misconceptions, but rather modern misinformation trends of holistic health and “wellness.” Physicians should be prepared to have respectful discussions about endometriosis treatments found on TikTok without invalidating the emotions that led patients to seek information on the internet.