An Analysis of Author and Content Characteristics of Hidradenitis Suppurativa Social Media Posts

With increasing global internet coverage, social media has become an integral part of many individuals’ lives, both personally and professionally. Social media platforms, such as Instagram, TikTok, X, and Facebook, are widely used to disseminate information, communicate with friends across the globe, promote brands, and market products.¹ Their utility extends into the medical field, as healthcare professionals and patients alike can share health information quickly and broadly. Social media platforms provide opportunities for patients to connect with others with similar health conditions and foster open communication regarding shared experiences. In addition, businesses and brands can use such platforms to promote products marketed to treat or manage health conditions, including a variety of skin conditions.

Although social media can be used to improve patient education and knowledge dissemination, potential risks include the spread of misinformation. It is common for influencers with no clinical dermatologic background to promote skin care products or routines that may lack clinical evidence.² For example, a 2022 study found that social media influences acne treatment, despite many recommendations not following established guidelines.³ Similarly, a distinct study evaluating characteristics of popular online posts detailing alopecia found that nonmedical influencers, wig companies, and patients were the most common creators.⁴ No top posts were created by board-certified dermatologists.

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition, primarily affecting apocrine gland-rich areas, such as the armpits; groin; and perineal, perianal, and inframammary areas. HS occurs following follicular occlusion. Clinical presentation varies from inflammatory nodules and abscesses to draining skin tunnels and bands of severe scar formation. These lesions are accompanied by discharge, odor, disfigurement, and pain, leading to a significant burden on quality of life.⁵ Recently, social media has become a popular way for the HS community to inspire and educate one another. We sought to examine author and content characteristics of popular online HS content, specifically on Instagram and TikTok, which have over 1 billion and 200 million monthly active users, respectively.⁴

Methods

The top 7 HS-related hashtags were used to retrieve relevant posts on Instagram and TikTok in December 2022. Hashtags included #Hidradenitissuppurativa, #HS, #Hidradenitis, #HSawareness, #Hidradenitissuppurativaawareness, #HSwarrior, and #Hidradenitissuppurativawarrior. The top 10 most popular posts were analyzed for each hashtag on Instagram, and the top 15 most popular posts were analyzed on TikTok to account for anticipated repeats. Posts were additionally sought from X, although these were ultimately excluded as the algorithm for top posts was heavily dependent on posting recency. Repeated posts and unrelated posts were removed before analysis. Parameters analyzed included author/creator characteristics and sponsorship status, content category, and whether an intervention was recommended or a product promoted.

Results

Following the removal of repeats and unrelated posts, 40 Instagram posts and 64 TikTok posts were analyzed. Patients and board-certified dermatologists created 62.5% and 2.5% of Instagram posts, respectively, compared to 71.9% and 14.0% TikTok posts. The remaining posts were created by product promoters, patient advisors, nonprofit organizations, and other medical personnel. Overall, 66.3% of posts were primarily educational, 24.0% were inspirational, 7.7% were promotional, and 1.9% did not align with predefined categories. Around 20% of posts recommended an intervention, most frequently medications and lifestyle changes. Eleven posts promoted 9 products, although only 1 post was created by a sponsored author. The HS-related TikTok space was dominated by a few key authors, primarily patients engaging in personal experience documentation.

Discussion

Most of the top HS-related posts on Instagram and TikTok consisted of patients educating others about HS, sharing their experiences living with the condition, and suggesting possible interventions. Although the methodology of this study did not include standardized comment analysis, many comments consisted

of other patients relating to posted patient experiences or sharing management strategies. In addition, some commenters expressed that they had never heard of HS before viewing the post yet be- lieved they might have the condition based on posted content. Instagram and TikTok platforms effectively fostered educational opportunities and increased HS awareness, which may help de- crease time-to-diagnosis for social media users with undiagnosed HS. However, some TikTok creators expressed concern over the platform removing their posts. In addition, few posts were initially censored, requiring confirmation to proceed despite the omission of sensitive or inappropriate videography.

Although we sought to discover author and content characteristics of HS-associated social media content, we did not analyze the accuracy of posts. Future research could score content ac- curacy to examine the potential spread of misinformation. This is a relevant avenue of future work, as one of the analyzed TikTok posts implied popping HS cysts and boils for therapeutic management, even though such maneuvers can perpetuate skin injury and irritation and increase infection risk.

Conclusion

Overall, most HS-related social media content was created by patients themselves. Most posts were primarily educational. Instagram and TikTok may be avenues to increase HS awareness. Social media platforms provide novel opportunities for physicians and patients to share health information, but the accuracy of posts must be vetted to avoid misinformation.

At the University of South Florida Morsani College of Medicine in Tampa, FL, Nicole Natarelli and Monica Khadka are medical students. In the department of dermatology and cutaneous surgery at the University of South Florida Morsani College of Medicine, Dr Krenitsky is a dermatology resident and Dr Lin is a dermatologist and an assistant professor.

Disclosure: The authors report no relevant financial relationships.

References

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3. Bahaj RK, Alsaggaf ZH, Abduljabbar MH, Hariri JO. The influence of social media on the treatment of acne in Saudi Arabia. Cureus. 2022;14(3):e23169. doi:10.7759/cureus.23169

4. Laughter M, Anderson J, Kolla A, et al. An analysis of alopecia related content on Instagram and TikTok. J Drugs Dermatol JDD. 2022;21(12):1316-1321. doi:10.36849/JDD.6707

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