Patient Survey Highlights Dissatisfaction and Undertreatment in Hidradenitis Suppurativa Care

The George Washington (GW) University recently shared the publication of its new study in the Journal of Drugs in Dermatology.¹

The study, titled, "The State of the Clinical Management Union: A Cross-Sectional Survey of Persons With Hidradenitis Suppurativa," reported levels of treatment dissatisfaction among patients with hidradenitis suppurativa (HS) and assessed patient awareness of FDA-approved treatments and therapies.²

Hurley Stage I hidradenitis suppurativa of axilla | Image Credit: © DermNet

Background and Methods

To better understand treatment experiences and awareness among individuals with HS and uncover gaps in patient knowledge and access to recommended treatments, researchers conducted a voluntary online survey.

Hosted on SurveyMonkey and shared via the HSconnect.org listserv, the survey was open to adults (18+) with HS during November and December 2023. Questions covered demographic details such as age, race/ethnicity, and gender, along with treatment experiences and perceptions. Responses were collected through multiple-choice, free-text, and Likert scale formats.

Data analysis involved statistical comparisons using Fisher’s exact tests, with significance determined at a 95% confidence level. Additionally, free-text responses were summarized with artificial intelligence assistance to identify key themes.

Findings

The survey involved the participation of 501 individuals with HS, highlighting long diagnostic delays, limited treatment satisfaction, and a general lack of patient awareness about FDA-approved therapies.

Most participants, predominantly women (91.82%) with an average age of 37, first noticed symptoms in their early 20s. Despite this, they reported that an HS diagnosis often came nearly a decade later, at an average age of 29.

While respondents identified antimicrobial washes (69.03%) and antibiotics (54.85%) as the most commonly-used treatments, only 28.84% of respondents noted having ever trialed treatment with a biologic therapy. Many had experience with a combination of therapies, but effectiveness remained a concern.

Furthermore, more than 73% of respondents were unaware that FDA-approved therapies for HS even exist, and over half (55.79%) stated they had never discussed these options with their dermatologist. In line with these statistics, only 17.97% reported satisfaction with their current route of treatment.

At the time of the survey's launch, the FDA had granted approval to Novartis' secukinumab (Cosentyx) just 1 month prior,³ which appeared to sparked hope for some patients. In total, 71.37% of respondents optimistic about new developments in HS treatment. Many anticipated improvements in their physical health (85.58%), mental well-being (77.78%), and even personal relationships (59.81%) with better access to targeted therapies.

However, skepticism remained, particularly among those with severe disease who have experienced previous treatment failures.

Conclusions

"Future studies should further evaluate other underlying reasons such as barriers to care, advertising approaches, and utilize enhanced patient-provider communication strategies to address gaps in care, empower patients, and dispel misinformation," according to study authors Murdock et al.

The study may have been limited by its cross-sectional design and potential misinterpretation of survey questions by respondents, among others.

"Our goal with this study was to highlight the multifaceted positive impact of new FDA treatments on those living with hidradenitis and the importance of pharma investment in this space which is finally happening," said Adam Friedman, MD, FAAD, one of the study's authors and a professor and chair of dermatology at the GW School of Medicine and Health Sciences.¹

"Sadly though, we also found that there are still significant gaps in care and dissatisfaction with current treatment approaches," Friedman added.

Despite the need for future research, the survey highlighted the critical need for increased awareness, better patient-provider communication, and improved access to dermatologic care.

References

1. Study reveals significant gaps in chronic inflammatory skin condition treatment and patient awareness. George Washington University. April 1, 2025. Accessed April 3, 2025. https://mediarelations.gwu.edu/study-reveals-significant-gaps-chronic-inflammatory-skin-condition-treatment-and-patient-awareness
2. Murdock A, Whiting C, Abdel Azim S, et al. The state of the clinical management union: A cross-sectional survey of persons with hidradenitis suppurativa. J Drugs Dermatol. 2025;24(4):381. doi:10.36849/JDD.8867
3. FDA approves Novartis Cosentyx as the first new biologic treatment option for hidradenitis suppurativa patients in nearly a decade. Novartis. October 31, 2023. Accessed April 3, 2025. https://www.novartis.com/news/media-releases/fda-approves-novartis-cosentyx-first-new-biologic-treatment-option-hidradenitis-suppurativa-patients-nearly-decade