6 Perceived Barriers to Healthcare by Hidradenitis Suppurativa Patients

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New data shows that there are several major reasons for the perceptions of patients with hidradenitis suppurativa viewing their own access to healthcare as problematic.

Six themes were identified regarding barriers to healthcare for hidradenitis suppurativa (HS), according to new findings, including the bidirectional association of HS activity and employment as well as the association of health coverage with perceived access to care and costs.1

This study was conducted to evaluate patient-perceived HS care barriers, given that the investigators viewed the topic as less well-understood. The research was authored by Leandra A. Barnes, MD, from Stanford University School of Medicine’s Department of Dermatology.

“This qualitative study highlights themes that generate a conceptual model for understanding barriers that may act synergistically to limit health care access and influence disease activity,” Barnes and colleagues wrote. “The disease activity of HS may be reduced when cycle elements are optimized.”

Background and Findings

The research team conducted a qualitative study with an inductive thematic analysis on semi-structured interviews of 45 individuals with HS from a variety of diverse socio-demographic backgrounds.

The team’s interviews, each lasting between 60 and 90 minutes, were conducted from March to April of 2020, and included individuals who were 18 years or older, spoke English, and had an official HS diagnosis. The participants’ diagnosis of HS was confirmed either with physician diagnoses or self-reported affirmative responses to a screening question.

The investigators’ main outcomes and measures of their research involved a combination of audio recording and verbatim transcriptions of their participant interviews. The team used a modified, grounded theory approach to develop the codebook, which they then used for inductive thematic analysis.

They recruited 45 participants in total, of whom 33 (73%) were female and 22 (49%) were White. Also, the median age of the participants was found to be 37 years.

Overall, the investigators identified 6 interrelated themes that they found were associated with participants’ perceived barriers to accessing care for their HS. These included the following:

  • Bidirectional associations between employment and their disease activity
  • Association of health care coverage with employment
  • Association of health care coverage with costs and perceived care access
  • Association of costs with access to patient-centered care
  • Influence of health care professional attitudes and knowledge on patient-centered care as well as on perceived access to care and disease activity
  • Influence of health system characteristics on patient-centered care, associated costs, perceived access to care, and disease activity

The investigators noted that these barriers may limit healthcare access and influence the disease activity of HS, with these themes generating a kind of conceptual model for understanding the barriers.

They also wrote that optimizing the cycle elements may lead to reduced disease activity for HS patients. The team’s research identified areas for future investigations and potential systems-level changes to improve patient-centered HS care access.

“Further studies are needed to confirm these hypothesized associations in larger samples of people with HS across health care systems and to test interventions to improve access to clinical care for people with HS,” they wrote.


  1. Barnes LA, Shukla N, Paul M, et al. Patient Perspectives of Health System Barriers to Accessing Care for Hidradenitis Suppurativa: A Qualitative Study. JAMA Dermatol. Published online April 05, 2023. doi:10.1001/jamadermatol.2023.0486.