TikTok as a Source of Education and Misinformation in Lichen Sclerosus

The purpose of this study is to evaluate the content, delivery, and quality of medical information for vulvar lichen sclerosus on the social media platform TikTok.

This is a descriptive, cross-sectional study. Using the third-party data scraping tool Apify, TikTok videos tagged with #lichensclerosus or "lichen sclerosus" were identified and sorted by view count. A sample of 100 videos was reviewed by 2 independent reviewers, excluding those not discussing lichen sclerosus. Videos were assessed using a coding document, the Patient Educational Materials Assessment Tool, and the DISCERN instrument. Interrater reliability was measured, and statistical analyses included Fleiss' kappa, intraclass correlation coefficient, t tests, and Wilcoxon rank sum test with Holm-Bonferroni correction.

Content creators included patients (46%), health care professionals (30%), and others. Topics focused on clinical disease (52%) and treatment (48%). Evidence-based medicine was discussed in 71.7% of treatment-related videos, while 51.7% included nonevidence-based approaches, with a neutral or positive sentiment. Videos discussing topical steroids often had negative sentiments. Quality assessment revealed 61% of videos were understandable, 27% actionable, and 46% contained misinformation. Videos by health care professionals had less misinformation and higher quality scores compared to patient-generated content. Commercially biased videos were more understandable but contained more misinformation.

TikTok serves as a significant platform for sharing information on lichen sclerosus, but nearly half of the content contains misinformation. Health care professionals need to engage in social media to provide accurate information and counteract misinformation. Enhanced collaboration with patient advocates and careful resource sharing can improve the quality and reliability of medical information available online.