Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice
Authors: Mastacouris Nicole , Tannenbaum Rachel , Strunk Andrew , Koptyev Jonathan , Aarts Pim , Alhusayen Raed , Bechara Falk G. , Benhadou Farida , Bettoli Vincenzo , Brassard Alain , Brown Debra , Choon Siew Eng , Coutts Patricia , da Silva Dimitri Luz Felipe , Daveluy Steven , Dellavalle Robert P. , del Marmol Veronique , Emtestam Lennart , Gebauer Kurt , George Ralph , Giamarellos-Bourboulis Evangelos J. , Goldfarb Noah , Hamzavi Iltefat , Hazen Paul G. , Horváth Barbara , Hsiao Jennifer , Ingram John R. , Jemec Gregor B. E. , Kirby Joslyn S. , Lowes Michelle A. , Marzano Angelo V. , Matusiak Lukasz , Naik Haley B. , Okun Martin M. , Oon Hazel H. , Orenstein Lauren A. V. , Paek So Yeon , Pascual José C. , Fernandez-Peñas Pablo , Resnik Barry I. , Sayed Christopher J. , Thorlacius Linnea , van der Zee Hessel H. , van Straalen Kelsey R. , Garg Amit 
Published: September 2023

Importance

Although several clinician- and patient-reported outcome measures have been developed for trials in hidradenitis suppurativa (HS), there is currently no consensus on which measures are best suited for use in clinical practice. Identifying validated and feasible measures applicable to the practice setting has the potential to optimize treatment strategies and generate generalizable evidence that may inform treatment guidelines.

Objective

To establish consensus on a core set of clinician- and patient-reported outcome measures recommended for use in clinical practice and to establish the appropriate interval within which these measures should be applied.

Evidence Review

Clinician- and patient-reported HS measures and studies describing their psychometric properties were identified through literature reviews. Identified measures comprised an item reduction survey and subsequent electronic Delphi (e-Delphi) consensus rounds. In each consensus round, a summary of outcome measure components and scoring methods was provided to participants. Experts were provided with feasibility characteristics of clinician measures to aid selection. Consensus was achieved if at least 67% of respondents agreed with use of a measure in clinical practice.

Findings

Among HS experts, response rates for item reduction, e-Delphi round 1, and e-Delphi round 2 surveys were 76.4% (42 of 55), 90.5% (38 of 42), and 92.9% (39 of 42), respectively; among patient research partners (PRPs), response rates were 70.8% (17 of 24), 100% (17 of 17), and 82.4% (14 of 17), respectively. The majority of experts across rounds were practicing dermatologists with 18 to 19 years of clinical experience. In the final e-Delphi round, most PRPs were female (12 [85.7%] vs 2 males [11.8%]) and aged 30 to 49 years. In the final e-Delphi round, HS experts and PRPs agreed with the use of the HS Investigator Global Assessment (28 [71.8%]) and HS Quality of Life score (13 [92.9%]), respectively. The most expert-preferred assessment interval in which to apply these measures was 3 months (27 [69.2%]).

Conclusions and Relevance

An international group of HS experts and PRPs achieved consensus on a core set of HS measures suitable for use in clinical practice. Consistent use of these measures may lead to more accurate assessments of HS disease activity and life outcomes, facilitating shared treatment decision-making in the practice setting.