A cross‐sectional analysis of social media searches for popular hidradenitis suppurativa treatments using Facebook, Reddit, and Google Trends

Hidradenitis suppurativa (HS) is a painful and disfiguring condition with many associated comorbidities. ¹ Patients with HS have been shown to have strong internalised skin biases and live with stigma regarding their condition and associated sequelae. ² An increasing number of patients turn to the internet where they can seek anecdotal advice on social media. Two such forums are “Hidradenitis Suppurativa Trust‐Patient Support Group” on Facebook and “r/Hidradenitis” on Reddit, which collectively have over 40 000 internationally active members, with significant growth seen in recent years. This study sought to utilise these forums to better understand what treatments patients are seeking out independently and the trends in interest of these treatments over time.

All posts in the online forums were viewed in reverse chronological order from July 15 to January 15, 2023. Only posts determined by the authors to be related to the treatment of HS were further analysed, with the number of posts for each unique treatment tallied. To better understand public interest in each unique treatment over time, the 15 most mentioned treatments on Facebook and Reddit collectively were input into Google Trends (GT) and categorised into four different subgroups including: “medication”, “procedures”, “hygiene” and “dietary modifications”. GT is a branch of the popular search engine that provides a visual depiction of popularity using Relative Search Volume (RSV). Using a web‐based extension, Glimpse, each RSV was converted into an Absolute Search Volume (ASV), providing a quantitative measure of the number of searches for each treatment.

There were 115 unique topics mentioned across both support forums, with a total of 1239 unique mentions. These included biologics, home remedies, surgical procedures and repurposed medications/supplements. The top mentioned treatments, gathered by tallying each unique description online, are shown in Figure 1. Of these top 15, three did not meet the interest threshold to provide quantitative data via GT, and five were grouped into two separate, broader terms [antibiotics and surgery] when searching via GT due to functional similarities. Data regarding the search interest over time of the resulting nine treatment options are shown in Figure 2. The treatments with the most searches on any day from 2008 to 2023 were turmeric (5751) and adalimumab (3820) on 6/30/2008 and 11/30/21, respectively. In assessing the overall demand for each of the four categories, diet was the most popular with an average of 831 searches/day, followed by procedures (640), medications (398) and hygiene (176).

FIGURE 1.

Top Treatments for HS Discussed Across Facebook and Reddit in 2023. Of the total 115 unique treatments mentioned across both Reddit and Facebook, the 15 most frequently mentioned topics (60.7%; 750 of 1239 total mentions) are displayed above. The remaining 16–115 items comprised 39.3% of the total mentions (489 of 1239). Of note, discussion of antibiotics and dietary supplements included all available vehicles. GLP1, glucagon‐like peptide 1.

FIGURE 2.

Google Trends Absolute Search Volume for Top HS Treatments Discussed on Facebook and Reddit, 2008–2023.

HS not only carries a large burden of disease, but recent data suggest this burden is poorly managed. ³ Inadequate disease control often leads to patients independently investigating additional treatment options and potentially using treatments that lack evidence, with the literature showing patients of all disease severities in HS report using alternative treatments. ⁴ This study found patients with HS who are seeking information about additional treatments are most interested in adalimumab, surgical interventions, dietary modifications and alternative treatments including chlorhexidine and turmeric. While the use of adalimumab for HS has been studied extensively, patients are also interested in treatments that lack a strong body of evidence due to the paucity in scientific studies. Familiarity with the limited data available on these alternative options may equip dermatologists to better serve their patients. Current recommendations for surgical management are largely based on uncontrolled retrospective reports. ⁵ Given the frequent interest in surgical interventions, care for HS patients may be enhanced by focused multidisciplinary clinics optimizing medical management of HS and any comorbidities before attempting procedures. Current interest in treatments for HS should prompt discussion behind the limited evidence and encourage collaboration to best optimise a patient's disease state.

CONFLICT OF INTEREST STATEMENT

There are no conflicts of interest to disclose.

DATA AVAILABILITY STATEMENT

Data available on request from the authors.