Development of a Quality-of-Life Measure for Hidradenitis Suppurativa

Overview

Journal J Cutan Med Surg

Publisher Sage Publications

Specialties Dermatology
General Surgery

Date 2016 Nov 13

PMID 27837158

Citations 14

Authors

Mia Sisic

Joslyn S Kirby

Sanwarjit Boyal

Lisa Plant

Chelsea McLellan

Jerry Tan

Affiliations

Soon will be listed here.

Abstract

Background: Hidradenitis suppurativa (HS) is a chronic skin disorder with adverse impacts on both physical and psychosocial well-being. There is presently no validated HS-specific quality-of-life (QoL) measure.

Objective: The objective of this study is to develop a QoL instrument for HS (HS-QoL) in accordance with recommended standards.

Methods: Patient interviews (concept elicitation) and expert input were used to develop the conceptual framework for outcomes perceived important to patients with HS. A HS-QoL-v1 measure was developed, and cognitive interviews with patients were conducted for pilot testing.

Results: Concept elicitation interviews with patients with HS (n = 21) generated 12 themes. Most frequently reported were impacts on daily activities and symptoms due to HS. These themes, along with literature review and input from clinical experts, informed development of the HS-QoL-v1. Nine cognitive interviews were conducted in a pilot test and resulted in the HS-QoL-v2 measure.

Conclusion: The HS-QoL-v2 is a preliminary QoL instrument for which further psychometric validation and establishment of clinimetric properties will be undertaken.

Citing Articles

Treatment of Hidradenitis Suppurativa Evaluation Study: the THESEUS prospective cohort study.

Ingram J, Bates J, Cannings-John R, Collier F, Gibbons A, Harris C Health Technol Assess. 2023; 27(30):1-107.

PMID: 38149635 PMC: 11017627. DOI: 10.3310/HWNM2189.

Quality of life in Hidradenitis Suppurativa (Acne Inversa): A scoping review.

Kaur A, Laing M, Griffin L, Carr P Skin Health Dis. 2023; 3(4):e214.

PMID: 37538319 PMC: 10395634. DOI: 10.1002/ski2.214.

SCI-QOL and WOUND-Q Have the Best Patient-reported Outcome Measure Design: A Systematic Literature Review of PROMs Used in Chronic Wounds.

van Alphen T, Ter Brugge F, van Haren E, Hoogbergen M, Rakhorst H Plast Reconstr Surg Glob Open. 2023; 11(1):e4723.

PMID: 36699211 PMC: 9831160. DOI: 10.1097/GOX.0000000000004723.

Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research.

Otten M, Augustin M, Blome C, Topp J, Niklaus M, Hilbring C Acta Derm Venereol. 2022; 103:adv00859.

PMID: 36129249 PMC: 9901329. DOI: 10.2340/actadv.v102.2485.

Hidradenitis Suppurativa Quality of Life (HiSQOL): creation and validation of the Polish language version.

Krajewski P, Matusiak L, Szepietowska M, Rymaszewska J, Jemec G, Kirby J Postepy Dermatol Alergol. 2022; 38(6):967-972.

PMID: 35126002 PMC: 8802972. DOI: 10.5114/ada.2020.97064.

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