International Group of HS Experts, Patient Research Partners Find Consensus on Evaluation Measures

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This set of measures may promote a more accurate assessment of HS in patients as well as on their life outcomes, with the goal being shared decision-making in clinical practice.

An international group of hidradenitis suppurativa (HS) experts and patient research partners (PRPs) reached a consensus on a core number of HS measures which were deemed appropriate for use in a clinical practice setting, according to recent findings.1

These core measures were sought out given the lack of a consensus on which clinician or patient-reported outcome measures for HS are the most well-suited for clinical practice utilization. The research leading to this consensus was led by Amit Garg, MD, from Northwell Health in New Hyde Park, New York.

Garg and colleagues noted that the integration of measures which are reported by patients may allow for greater understanding of treatment effects on their symptoms, given both underestimation by physicians and patient fears of stigmatization.2

“The objective of this study was to provide expert and patient consensus-based recommendations on the application of validated, HS-specific outcome measures that are feasible for clinical practice,” Garg and colleagues wrote.

Background and Findings

The investigators developed their consensus statement—the Hidradenitis Suppurativa Core Outcomes Set International Collaboration (HiSTORIC) consensus statement—as a global, multi stakeholder set of PRPs, experts, methodologists, and partners in the industry devoted to the creation of a core outcome set (COS) for interventional HS trials and for clinical practice.

Through the Consortium for Harmonizing Outcomes Research in Dermatology and Core Outcome Set Initiative Collaboration, the mission of HiSTORIC was decided to be to standardize as well as enhance the measurement of patients’ responses to treatment, disease activity, and treatment efficacy for dermatologic conditions.

In 2018, the investigators had created the main domain set for interventional clinical research in the HS space, comprising physical signs, pain, HS-specific life quality, global assessment, progression of course, and patient symptoms. Since 2018, the consensus has formulated and validated clinician-reported outcome measures (ClinROMs) in addition to those which are patient-reported (PROMs), all of which align with the core domains.

In this research, the investigators involved 55 experts in HS and 24 PRPs from the HiSTORIC group in a process built into 3 phases: a literature search to find possible outcome measures, an online item reduction survey, and finally an e-Delphi survey to formulate a consensus on the measures which are shown to be helpful for clinicians. HS experts and PRPs were told to separately finish consensus surveys as a means to prioritize the feasible ClinROMs and PROMs for application in clinical settings.

During each round of consensus gathering, the participants were given a concise overview of the components and scoring methods for the study’s outcome measures. With the investigators’ goal of facilitating the process of selection, the participants were also given data about the feasibility aspects of the clinician measures.

A consensus was considered to have been found by the investigators when a minimum of 67% of the survey respondents were found to have expressed agreement with regard to the utility of a measure in clinical practice settings.

The rates of response among the included experts for reduction items, the first e-Delphi round, and the second e-Delphi round surveys were found by the investigators 76.4%, 90.5%, and 92.9%, respectively. Meanwhile, the research team noted that PRPs had response rates of 70.8%, 100%, and 82.4%, respectively.

The majority of the included experts were said to be active dermatologists that had substantial clinical experience over 18 - 19 years. In the investigators’ final e-Delphi round, the PRPs were shown to have been 85.7% female and in the age group of 30 - 49 years.

Additionally, the team’s last e-Delphi round data indicated an overall consensus between HS experts and PRPs in favor of utilizing the HS Investigator Global Assessment (71.8%) and the HS Quality of Life score (92.9%). They also found that most experts in the study preferred a 3-month assessment interval as a timeframe for applying the 2 measures (69.2%).

“Future consensus studies will establish targets of treatment in practice, as well as a definition of minimal disease activity that may be applied in clinical trials and in practice as more efficacious treatments of HS are developed,” they wrote.


  1. Mastacouris N, Tannenbaum R, Strunk A, et al. Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice: A HiSTORIC Consensus Statement. JAMA Dermatol. Published online September 27, 2023. doi:10.1001/jamadermatol.2023.3282.
  2. Jedrzejczak MJ, Ingram JR, Lowes MA, et al. Expert knowledge, attitudes, and practices in management of hidradenitis suppurativa pain. JAMA Dermatol. 2021;157(4):464-466. doi:10.1001/jamadermatol.2020.5857.