Evaluating lichen sclerosus content on TikTok by content creators: a cross-sectional analysis

What is known about this subject in regard to women and their families? Vulvar lichen sclerosus is a debilitating disease that is often undertreated due to underreported symptoms and recognition. Many women and their families turn to the internet or social media to obtain medical information; however, not all information found on these platforms is evidence-based. What is new from this article as messages for women and their families? Most of the information that women and their families may find about vulvar lichen sclerosus on TikTok is created by nonhealthcare individuals and is of lower quality health information. Additionally, these nonhealthcare content creators utilize relevant sources and discuss treatment benefits, risks, and other actionable items less often than healthcare creators. Introduction Vulvar lichen sclerosus (VLS) is a chronic inflammatory dermatosis affecting an estimated 1 in 900 girls and can impact women’s self-image, sexual well-being, and quality of life.1,2 VLS is often underdiagnosed and undertreated due to underreported symptoms and recognition.3 TikTok has been used to increase VLS awareness. Notably, 82% of dermatology patients use the internet or social media for medical information,4 which can impact patient-physician relationships. This project sought to assess the quality of TikTok videos on VLS. Materials and Methods In May 2023, the following terms were entered into TikTok’s search algorithm: “lichen sclerosus,” “lichen sclerosis,” “lichen sclerosus treatment,” and “lichen sclerosus symptoms.” The top 50 videos for each term (200 total) were reviewed, and 91 videos met the inclusion criteria. Information on video characteristics and creators was collected. Video quality was evaluated by a VLS expert and two medical students, using DISCERN,5 a validated 16-item questionnaire that assesses consumer health information quality based on criteria such as references and has been widely used to evaluate audio/visual (A/V) health information,6 and Patient Education Materials Assessment Tool (PEMAT) A/V,7 a validated tool that assesses understandability and actionability of A/V materials. Statistical analyses were performed using ANOVA, the Tukey honestly significant difference post hoc, and t test. Results ANOVA analyses revealed a significant effect of content creators on DISCERN and PEMAT scores: DISCERN, F (4, 34) = 3.701 and P =.013; PEMAT Total, F (4, 86) = 4.181 and P =.004; PEMAT understandability, F (4, 86) = 5.169 and P <.001; and PEMAT actionability, F (4, 86) = 3.140 and P =.018 scores. Tukey honestly significant difference post hoc tests revealed significant differences in mean DISCERN scores (MD = 8.05 and P =.039), mean PEMAT total scores (MD = 22.82 and P =.005), and mean PEMAT understandability scores (MD = 19.05 and P <.001) between physicians and patients as content creators. Descriptive statistics for video characteristics and creators are found in Table 1. Two-sided t tests revealed significantly higher DISCERN and PEMAT understandability and actionability scores among physicians versus nonphysicians and healthcare versus nonhealthcare content creators (Table 2). Table 1 - Overview of VLS video characteristics, creators, and content on TikTok Average views by creator type Number of views Patient 62,077 Physician 91,709 Other content creator 92,300 Other healthcare professionala 11,281 Company 4,606 Average likes by creator type Number of likes Patient 4,687 Physician 1,133 Other content creator 2,039 Other healthcare professional 169 Company 95 Average comments by creator type Number of comments Patient 81,687 Physician 78 Other content creator 48 Other healthcare professional 25 Company 8 Average shares by creator type Number of shares Patient 86 Physician 50 Other content creator 43 Other healthcare professional 16 Company 9 Creator type % (number) of videos Patient 40% (36) Physician 27% (25) Other content creator 18% (16) Other healthcare professional 9% (8) Company 7% (6) Physician specialty % (number) of videos Dermatology 32% (8) OBGYN 40% (10) GP/IM 16% (4) Uro-Gyn 12% (3) Video discussion % (number) of videos Personal experience 37% (34) Educational LS content 55% (50) Treatment advertising 9% (8) Treatment/management 47% (43) Disease etiology 42% (38) Diagnosis 62% (56) Impact on lifestyle 38% (35) Physical exam/symptoms 69% (63) Treatments discussed % (number) of videos Topical steroids 55% (28) Nontopical steroids 24% (12) Laser 10% (5) Surgery 6% (3) Hormone modification 10% (5) Other treatment 27% (14) Site mentioned % (number) of videos Vulva 53% (48) Genitals 18% (16) Extragenital 4% (4) Anus 1% (1) Pelvis 1% (1) N/A 30% (27) GP/IM, general practitioner/internal medicine; LS, lichen sclerosus; OBGYN, obstetrician-gynecologist; Uro-Gyn, urogynecologist; VLS, vulvar lichen sclerosus.aOther healthcare professionals included pelvic floor physical therapists, nurses, functional medicine practitioners, and sexual and reproductive health accounts. Table 2 - Average TikTok DISCERN and PEMAT scores by creator type Mean T test (2-sided P)a DISCERN score Physician 36.13 <.001 Nonphysicianb 27.66 Healthcarec 34.63 .002 Nonhealthcared 27.28 PEMAT total score Physician 63.27 .004 Nonphysician 47.83 Healthcare 63.57 <.001 Nonhealthcare 45.53 PEMAT understandability score Physician 67.62 .003 Nonphysician 54.45 Healthcare 66.99 <.001 Nonhealthcare 52.99 PEMAT actionability score Physician 54.67 .040 Nonphysician 35.29 Healthcare 57.07 .003 Nonhealthcare 31.25 PEMAT, Patient Education Materials Assessment Tool.aThe t test with equal variances assumed.bPhysician vs nonphysician (patient, other content creator, other healthcare professional, and company).cHealthcare (physicians and other healthcare professionals) vsdnonhealthcare (patient, other content creators, and company). Discussion VLS is stigmatized, and those affected may be uncomfortable sharing symptoms with their healthcare team. Thus, patients may initially turn to social media and other online sources to gather disease information. On TikTok, healthcare professionals were more likely to review disease etiology, physical exam findings/symptomatology, and treatment with topical steroids, while nonhealthcare creators focused on disease experience, lifestyle impact, and home remedies. Of the videos evaluated in this study, nonhealthcare content creators generate the most videos, views, likes, comments, and shares on TikTok. However, based on DISCERN and PEMAT A/V scores, healthcare creators produced higher quality health information by acknowledging relevant sources and discussing treatment benefits, risks, and other actionable items more often than nonhealthcare creators (Table 2). These findings demonstrate a need for more healthcare professional-created educational videos about VLS. We urge experts to establish scientific standards and create more accurate and accessible materials to make social media platforms more effective resources for patients and foster a stronger therapeutic alliance between patients and their healthcare providers. Limitations include the sample size, focus on one platform, and the cross-sectional design, given social media’s rapid turnover. Conflicts of interest The authors declare no conflicts of interest. Funding None. Study approval N/A Author contributions MJE: Participated in research design, writing of the paper, performance of the research, and data analysis. JKB: Participated in research design, writing of the paper, performance of the research, and data analysis. CNK: Participated in research design, writing of the paper, performance of the research, and data analysis.