Factors Affecting HS Treatment Decisions Include Risk Assessments, Treatment Fatigue


The factors highlighted in this analysis may help dermatologists to better understand the concerns, misconceptions, and perceived risks reported by patients with HS.

Nicole Salame, MD

Credit: LinkedIn

Nicole Salame, MD

Credit: LinkedIn

The medical decision-making factors which impact treatment for hidradenitis suppurativa (HS) are treatment fatigue, views on risk of treatment, threshold for suffering, understanding of the condition, and information sources, according to recent findings.1

These results were drawn from a new analysis of the elements that lead to medical decisions among those with diagnosed HS, with the study having an emphasis on biologic treatments. This research was led by Nicole Salame, MD, from the department of dermatology at Emory University School of Medicine in Atlanta, Georgia.

“This qualitative study aimed to elucidate factors affecting medical treatment decisions in patients with HS,” Salame and colleagues wrote. “A goal was to ensure appropriate representation of Black women, a historically underrepresented group in HS research even though they are disproportionately affected by this condition.”2

Background and Findings

The investigators implemented a comprehensive study design which was cross-sectional and qualitative, with the analysis evaluating subjects’ reports of pain, experiences with healthcare, and medical choice-making among those with HS. They used semi-structured interviews to execute this process, with recruitment of participants taking place between November 2019 - March 2020 at 2 locations.

The research team’s inclusion criteria involved adults aged 18 or older who had a diagnosis of HS, were English-speaking, and reported an average pain score of at least 1 on a 0- to 10-point numeric rating scale beginning in the week prior. The group of subjects had all been given care from a single specialist in HS.

The team also sought to ensure demographic diversity, using a minimum representation of 7 women and 7 Black individuals with the overall goal of aligning with the broader HS distribution seen throughout the US. Those who were used as subjects self-reported their race and their ethnicity.

Severity of participants’ skin condition was classified using the Hurley stage. Patient-reported health outcomes, assessing the skin disease’s impact on health-related quality of life (HRQoL), were evaluated by the research team through the Dermatology Life Quality Index.

The interview guide used by the investigators prompted conversations on familiar HS therapies, patients’ perceptions of risk, and considerations related to the drug adalimumab. Standardized information on this drug, including its US Food and Drug Administration (FDA) approval for patients with HS, details about administration, data from clinical studies on efficacy, and risks of lymphoma and infection, were all provided by the team to the respondents.

These participants discussed both their decisions on initiating treatment with adalimumab and the rationale behind the decision. The influences on patient decision making were identified through thematic analyses by the research team.

Lengthy descriptions were utilized by the investigators for detailed observations by the participants and for contextual interpretations. Once thematic saturation was reached by the team the analysis concluded, taking place from December 2021 - August 2022.

Overall, the team’s research ended up looking at 21 individuals. These participants had a median age (IQR) of 38.5 (27.9-43.4) years, and they were 76% female-identifying.

The investigators found that almost all of the subjects, 96% specifically, exhibited Hurley stage II or III disease. They also reported that 71% of the study population were shown to have a prior history of treatment with adalimumab.

Suffering threshold, perceptions of risk, fatigue, comrprehension of the disease, and various means of receiving information such as dermatologists, the Internet, ads, and input from friends and other loved ones were all potential factors in new treatment initiation.

“While participants often turned to internet resources, advertisements, and friends and loved ones, dermatologists were still considered a primary, trusted source of information,” they wrote. “By addressing misconceptions about perceived risks, identifying gaps in disease knowledge, and emphasizing the importance of early treatment to prevent scarring and disease progression, dermatologists may empower patients with HS to make informed and meaningful treatment decisions and to try new therapies.”


  1. Salame N, Sow YN, Siira MR, et al. Factors Affecting Treatment Selection Among Patients With Hidradenitis Suppurativa. JAMA Dermatol. Published online January 10, 2024. doi:10.1001/jamadermatol.2023.5425.
  2. James JF, Madray VM, Salame N, et al. Demographic gaps and requirements for participation: a systematic review of clinical trial designs in hidradenitis suppurativa. Dermatology. 2023;239(1):45-51. doi:10.1159/000526069.
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