HS Experts Reach Consensus on Treatment Outcome Measures


Hidradenitis suppurativa (HS) experts collaborated to reach consensus on a core set of outcome measures, with the intent of improving the management of HS in clinical practice.


  • Participants in the study were 55 HS experts from the HiSTORIC group (dermatologists, internists, surgeons, and nurses) and 24 patient research partners.

  • The group identified clinician- and patient-reported HS outcome measures in the literature, then participated in an online item reduction survey, followed by an electronic Delphi survey to reach consensus on which measures should be used in clinical practice. Consensus was defined as at least 67% of participants agreeing/strongly agreeing or disagreeing/strongly disagreeing about the use of a measure in clinical practice.

  • The initial literature search yielded 11 HS studies with clinician-reported outcome measures and 12 with patient-reported outcomes; of these, eight and five, respectively, were included in the final reduction survey.


  • The group reached consensus on two HS outcome measures for use in clinical practice: the HS Investigator Global Assessment (HS-IGA) score, a clinician-reported outcome measure selected by the HS experts, and the HS Quality of Life (HiSQOL) score, a patient-reported outcome measure selected by patients.

  • The HS-IGA score uses a number between 0 and 5 based on the sum of abscesses, inflammatory and noninflammatory nodules, and tunnels in regions of the upper or lower body.

  • The HiSQOL, a disease-specific quality-of-life measure for adults with HS, is designed to capture unique features of HS, including symptoms (such as pain, itch, odor, and drainage) and psychosocial outcomes and activities that may be affected by the disease.


“The intent of these recommendations is to provide an objective framework with both clinician and patient input that can facilitate bidirectional discussion, trust building, and decision-making on the current treatment strategy and the need to adjust or escalate treatment in an appropriate time frame,” the authors wrote.


The study was published online in JAMA Dermatology on September 27, 2023. The lead author was Nicole Mastacouris, MS, and the corresponding author was Amit Garg, MD, both of Northwell Health, New Hyde Park, New York.


The consensus results may have been affected by variations in HS management by region. Neither measure has been studied in clinical practice, and practice variability may limit their implantation.


The study was supported by grants from UCB and AbbVie. Mastacouris had no financial disclosures. Garg disclosed grant support from AbbVie and UCB during the conduct of the study, as well as personal fees from AbbVie, UCB, Aclaris Therapeutics, Anaptys Bio, Aristea Therapeutics, Boehringer Ingelheim, Bristol-Myers Squibb, Incyte, Insmed, Janssen, Novartis, Pfizer, Sonoma Biotherapeutics, Union Therapeutics, Ventyx Biosciences, and Viela Biosciences during the conduct of the study; Garg also holds patents for HS-IGA and HiSQOL. Many other coauthors disclosed relationships with multiple companies, including AbbVie and UCB, and some also disclosed patents, including patents for HiSQOL and HS Area and Severity Index (HASI).

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