Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice: A HiSTORIC Consensus Statement
Recommended Citation
Mastacouris N, Tannenbaum R, Strunk A, Koptyev J, Aarts P, Alhusayen R, Bechara FG, Benhadou F, Bettoli V, Brassard A, Brown D, Choon SE, Coutts P, da Silva DLF, Daveluy S, Dellavalle RP, Del Marmol V, Emtestam L, Gebauer K, George R, Giamarellos-Bourboulis EJ, Goldfarb N, Hamzavi I, Hazen PG, Horváth B, Hsiao J, Ingram JR, Jemec GBE, Kirby JS, Lowes MA, Marzano AV, Matusiak L, Naik HB, Okun MM, Oon HH, Orenstein LAV, Paek SY, Pascual JC, Fernandez-Peñas P, Resnik BI, Sayed CJ, Thorlacius L, van der Zee HH, van Straalen KR, and Garg A. Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice: A HiSTORIC Consensus Statement. JAMA Dermatol 2023.
Document Type
Article
Publication Date
11-1-2023
Publication Title
JAMA Dermatol
Abstract
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.
Medical Subject Headings
Male; Humans; Female; Hidradenitis Suppurativa; Quality of Life; Outcome Assessment, Health Care; Consensus; Patient Reported Outcome Measures; Delphi Technique
PubMed ID
37755725
ePublication
ePub ahead of print
Volume
159
Issue
11
First Page
1258
Last Page
1266
