Survey Reveals Wound Care Access Barriers Facing Hidradenitis Suppurativa Patients

Hidradenitis suppurativa (HS) is one of dermatology’s most burdensome chronic inflammatory diseases, and a new research letter published in the Archives of Dermatological Research suggests that one of its most disabling dimensions, the day-to-day management of open wounds, remains chronically underserved. The study, led by Timothy Klufas of Bridgeport Hospital, Yale New Haven Health, together with colleagues at Dartmouth’s Geisel School of Medicine, Quinnipiac University’s Frank H. Netter MD School of Medicine, and the University of Connecticut Department of Dermatology, surveyed patients at a specialty clinic to understand how they perceive their access to wound care services. Published on 28 September 2026, the work arrives at a moment when clinical guidelines for HS wound management are only beginning to mature, and it adds a patient-centered lens to a conversation that has historically been dominated by physician and health-system perspectives.

HS is a chronic, immune-mediated inflammatory condition that targets hair follicles in intertriginous areas, most commonly the axillae, groin, perineum, and inframammary regions. Its pathogenesis involves follicular occlusion, rupture, and a cascade of innate immune activation driven in large part by interleukin-17 and interleukin-23 signaling, producing the painful nodules, abscesses, and draining tunnels known as sinus tracts that define moderate-to-severe disease. Because these lesions recurrently open, drain, and heal only to flare again, many patients live with wounds that never fully resolve. The result is a skin disease that behaves, in functional terms, like a chronic wound disorder, demanding dressings, drainage management, infection surveillance, and frequent clinical attention, often for decades of a patient’s life.

That wound-care burden is precisely where the new survey focuses. The authors distributed their questionnaire with assistance from the HS Foundation, capturing the experiences of patients already connected to a specialty clinic, a population that, despite being relatively well served compared with many people living with HS, still reported meaningful friction in obtaining wound care. The study received ethical approval from the University of Connecticut Health Center Institutional Review Board and was conducted in accordance with the Declaration of Helsinki, with informed consent obtained from all participants. The datasets themselves are not publicly available due to patient privacy and institutional review board restrictions, but the published letter frames a set of concerns that align closely with what prior literature has documented about the structural barriers surrounding HS care.

Those barriers are not abstract. A 2023 qualitative study published in JAMA Dermatology by Barnes and colleagues documented patient perspectives of health system obstacles to accessing HS care, describing delays in diagnosis, fragmented referral pathways, and the exhausting effort required to navigate appointments across multiple specialties. A separate 2023 study by Poondru, Scott, and Riley in the International Journal of Women’s Dermatology examined wound care counseling from the dermatologists’ side, revealing that clinicians themselves often feel underprepared to guide patients through the practical realities of managing draining lesions at home. The new survey complements these works by centering the patient’s own perception of whether wound care is actually reachable, affordable, and coordinated, a question that has rarely been asked directly in this population.

The economic backdrop makes the findings more urgent. A 2019 retrospective analysis of US administrative claims data by Marvel and colleagues, published in BMJ Open, quantified the substantial disease burden and cost of HS, showing that patients accumulate high healthcare utilization across dermatology, surgery, and emergency settings. More pointedly, a 2023 single-center study by Towfighi and colleagues at an urban wound-care clinic documented the financial toxicity of HS, describing how the cumulative costs of dressings, clinic visits, and lost productivity weigh on patients who often already face socioeconomic disadvantage. HS disproportionately affects women, people of color, and lower-income populations, meaning that access gaps in wound care compound existing inequities rather than occurring at random.

Against this backdrop, the specialty clinic survey by Klufas, Ajmani, Strelzer, Zhou, and Sarfo serves as a targeted probe of a specific failure point. Wound care for HS is technically demanding: lesions may require absorbent dressings capable of handling continuous drainage, antimicrobial agents when secondary infection is suspected, and careful technique to avoid tissue trauma during dressing changes. Patients frequently perform these tasks themselves, without formal training, and the recent best-practice consensus published in the Journal of Wound Care by Swoboda and colleagues in 2025 represents the first comprehensive attempt to codify how HS lesions should be managed. Yet a guideline is only as effective as the access structures that deliver it, and the survey’s premise is that patients’ perceptions of access, whether they can get appointments, afford supplies, and find clinicians who understand HS-specific wound needs, are a measurable indicator of whether best practice ever reaches the bedside.

The study’s design reflects both the promise and the limits of survey-based research in rare and stigmatized diseases. By recruiting through a specialty clinic and partnering with a patient-focused foundation, the investigators reached individuals with confirmed diagnoses and lived experience of the care pathway, but the same recruitment strategy means the sample may underrepresent patients who have given up on the health system entirely, those without any dermatology connection, and those facing the most severe access barriers. The authors are transparent about these constraints, and the research letter format signals that the work is intended as an exploratory signal rather than a definitive prevalence estimate. Even so, perception data of this kind is valuable precisely because patient-reported access is a strong predictor of adherence, follow-up, and ultimately clinical outcomes in chronic disease management.

What emerges from the collective evidence is a picture of a disease whose wound-care needs fall into a gap between medical specialties. Dermatology clinics are expert in the systemic and biologic management of HS inflammation, with tumor necrosis factor, interleukin-17, and interleukin-23 inhibitors now standard options for moderate-to-severe disease, but they are often not structured to provide recurring wound care visits. Wound care clinics, meanwhile, are equipped for dressing management and debridement but may lack familiarity with HS’s distinctive disease course, in which wounds are not healing failures to be closed but active inflammatory lesions to be managed over time. Patients report shuttling between these systems, duplicating paperwork, repeating their histories, and sometimes paying out of pocket for supplies that no single provider has taken responsibility for. The survey’s contribution is to document, from the patient’s vantage point, how that fragmentation is experienced on the ground.

The implications for clinical practice are concrete. If patients perceive wound care as inaccessible, interventions should target the specific friction points: integrating wound care services into HS specialty clinics, training dermatology teams in HS-specific dressing selection and drainage management, standardizing insurance coverage for the supplies that HS wound care requires, and using patient foundations and telehealth to extend education to people who cannot reach specialty centers. The authors’ acknowledgment of the HS Foundation’s role in survey distribution hints at the kind of partnership model that could carry these improvements forward. Corresponding author Akua Sarfo of UConn Dermatology and her coauthors, who collectively designed the study, collected and analyzed the data, and wrote the manuscript without dedicated funding, frame the work as a call to measure and then dismantle the access barriers that patients themselves identify as most consequential.

For a disease that has historically been underdiagnosed, understudied, and shrouded in stigma, the accumulation of patient-centered evidence marks real progress. The 2025 wound care best-practice consensus, the dermatologist counseling survey, the qualitative health-systems study, and now this access-focused patient survey together form a scaffold on which health systems can build coordinated, equitable wound care for HS. The research letter does not offer a single dramatic finding, but it asks the right question in the right place: not whether wound care for HS is technically possible, but whether the people who need it can actually reach it. As biologic therapies continue to reduce inflammatory burden for many patients, the mechanical, financial, and logistical challenge of wound management will remain, and studies like this one ensure that the patients who live with that challenge daily are the ones defining what better access must look like.

Subject of Research: Patient perceptions of wound care access in hidradenitis suppurativa

Article Title: Perceptions of wound care access for hidradenitis suppurativa patients: a specialty clinic survey

Article References: Perceptions of wound care access for hidradenitis suppurativa patients: a specialty clinic survey. (n.d.). https://doi.org/10.1007/s00403-026-04924-w

Image Credits: AI Generated

DOI: 10.1007/s00403-026-04924-w

Keywords: hidradenitis suppurativa, wound care, healthcare access, dermatology, patient survey, health disparities, chronic wounds, financial toxicity, specialty clinics, skin disease, wound management, patient-reported outcomes