TY - JOUR
T1 - Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice
T2 - A HiSTORIC Consensus Statement
AU - Mastacouris, Nicole
AU - Tannenbaum, Rachel
AU - Strunk, Andrew
AU - Koptyev, Jonathan
AU - Aarts, Pim
AU - Alhusayen, Raed
AU - Bechara, Falk G.
AU - Benhadou, Farida
AU - Bettoli, Vincenzo
AU - Brassard, Alain
AU - Brown, Debra
AU - Choon, Siew Eng
AU - Coutts, Patricia
AU - Da Silva, Dimitri Luz Felipe
AU - Daveluy, Steven
AU - Dellavalle, Robert P.
AU - Del Marmol, Veronique
AU - Emtestam, Lennart
AU - Gebauer, Kurt
AU - George, Ralph
AU - Giamarellos-Bourboulis, Evangelos J.
AU - Goldfarb, Noah
AU - Hamzavi, Iltefat
AU - Hazen, Paul G.
AU - Horváth, Barbara
AU - Hsiao, Jennifer
AU - Ingram, John R.
AU - Jemec, Gregor B.E.
AU - Kirby, Joslyn S.
AU - Lowes, Michelle A.
AU - Marzano, Angelo V.
AU - Matusiak, Lukasz
AU - Naik, Haley B.
AU - Okun, Martin M.
AU - Oon, Hazel H.
AU - Orenstein, Lauren A.V.
AU - Paek, So Yeon
AU - Pascual, José C.
AU - Fernandez-Peñas, Pablo
AU - Resnik, Barry I.
AU - Sayed, Christopher J.
AU - Thorlacius, Linnea
AU - Van Der Zee, Hessel H.
AU - Van Straalen, Kelsey R.
AU - Garg, Amit
N1 - Publisher Copyright:
© 2023 American Medical Association. All rights reserved.
PY - 2023/11/15
Y1 - 2023/11/15
N2 - 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..
AB - 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..
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U2 - 10.1001/jamadermatol.2023.3282
DO - 10.1001/jamadermatol.2023.3282
M3 - Article
C2 - 37755725
AN - SCOPUS:85177103012
SN - 2168-6068
VL - 159
SP - 1258
EP - 1266
JO - JAMA Dermatology
JF - JAMA Dermatology
IS - 11
ER -