Hidradenitis Suppurativa on TikTok: Representation, Treatment Messaging, and Psychosocial Themes
Source: PubMed Central Open Access, NCBI / U.S. National Library of Medicine
Background: Hidradenitis suppurativa (HS) disproportionately affects women and individuals with skin of color (SOC) and is associated with a significant psychosocial burden. TikTok has become a major platform for HS storytelling, yet representation, treatment messaging, and psychosocial factors remain poorly characterized. Objective: The objective of this study is to characterize creator demographics, SOC representation, treatment discussions, and psychosocial themes in highly visible HS TikTok videos. Methods: We performed a cross-sectional content analysis of the top 200 TikTok videos under four HS-related hashtags. After removing duplicates and unrelated posts, 133 videos were coded for creator type, content format, gender, Fitzpatrick type, treatment, and psychosocial themes. A 20% subsample was dual-coded to assess interrater reliability. Engagement rates were calculated, and group differences were assessed using t-tests and one-way analysis of variance. Results: Most videos were created by patients (90%), with women representing the majority of creators (90%). Most videos were testimonials (80%). Representation of Fitzpatrick IV-VI was high (57%). Treatments discussed included guideline-supported therapies (24%), over-the-counter adjuncts (29%), and alternative remedies (19%). Psychosocial themes of empowerment (88%) and mental health (36%) were common. There was no significant difference in engagement across creator type, skin tone, or content format. Conclusion: HS Ti
Abstract
Background: Hidradenitis suppurativa (HS) disproportionately affects women and individuals with skin of color (SOC) and is associated with a significant psychosocial burden. TikTok has become a major platform for HS storytelling, yet representation, treatment messaging, and psychosocial factors remain poorly characterized. Objective: The objective of this study is to characterize creator demographics, SOC representation, treatment discussions, and psychosocial themes in highly visible HS TikTok videos. Methods: We performed a cross-sectional content analysis of the top 200 TikTok videos under four HS-related hashtags. After removing duplicates and unrelated posts, 133 videos were coded for creator type, content format, gender, Fitzpatrick type, treatment, and psychosocial themes. A 20% subsample was dual-coded to assess interrater reliability. Engagement rates were calculated, and group differences were assessed using t-tests and one-way analysis of variance. Results: Most videos were created by patients (90%), with women representing the majority of creators (90%). Most videos were testimonials (80%). Representation of Fitzpatrick IV-VI was high (57%). Treatments discussed included guideline-supported therapies (24%), over-the-counter adjuncts (29%), and alternative remedies (19%). Psychosocial themes of empowerment (88%) and mental health (36%) were common. There was no significant difference in engagement across creator type, skin tone, or content format. Conclusion: HS TikTok videos are dominated by women and SOC creators sharing testimonials about lived experiences. While psychosocial support is prominent, guideline-based treatment information and dermatology provider input are limited, highlighting an opportunity for clinicians to share accurate and inclusive HS education on social media.