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The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials.

Authors
  • Kirby, J S1
  • Thorlacius, L2
  • Villumsen, B3
  • Ingram, J R4
  • Garg, A5
  • Christensen, K B2
  • Butt, M1
  • Esmann, S2
  • Tan, J6
  • Jemec, G B E2
  • 1 Department of Dermatology, Penn State Health Milton S. Hershey Medical Center, Hershey, PA, U.S.A.
  • 2 Department of Dermatology, Zealand University Hospital, Roskilde; Health Sciences Faculty, University of Copenhagen, Copenhagen, Denmark. , (Denmark)
  • 3 The Patients' Association HS Denmark, Copenhagen, Denmark. , (Denmark)
  • 4 Division of Infection & Immunity, Cardiff University, University Hospital of Wales, Heath Park, Cardiff, CF14 4XN, U.K.
  • 5 Department of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra Northwell, New Hyde Park, NY, U.S.A.
  • 6 Department of Medicine, University of Western Ontario, Windsor, ON, Canada. , (Canada)
Type
Published Article
Journal
British Journal of Dermatology
Publisher
Wiley (Blackwell Publishing)
Publication Date
Aug 01, 2020
Volume
183
Issue
2
Pages
340–348
Identifiers
DOI: 10.1111/bjd.18692
PMID: 31705538
Source
Medline
Language
English
License
Unknown

Abstract

Hidradenitis suppurativa (HS) is a chronic, inflammatory condition that can have a large negative impact on health-related quality of life (HRQOL). A reliable and validated measure of HS-specific HRQOL in clinical studies is needed. To develop and validate the Hidradenitis Suppurativa Quality Of Life (HiSQOL©) scale, for clinical trial measurement of HS-specific HRQOL. In stage 1, qualitative concept elicitation interviews were conducted with patients with HS in Denmark (n = 21) and the U.S.A. (n = 21). In stage 2, cognitive debriefing interviews were performed with U.S. (n = 30) and Danish patients with HS (n = 30). In stage 3 an observational study of 222 patients with HS in the U.S.A. was conducted for item reduction, measure validation and assessment of psychometric properties. In stage 4, an observational study of 215 patients with HS in Denmark was conducted to confirm the psychometric structure derived in stage 3. In both studies the Dermatology Life Quality Index, Hospital Anxiety and Depression Scale and numerical rating scale for pain were also included. In concept elicitation, 99 items were generated, which were reduced to 41 after removing duplicates. In cognitive debriefing, two items were added and one item removed. A 42-item instrument was psychometrically assessed. Based on psychometric analyses and patient input, the instrument was reduced to 17 items that had strong psychometric properties in both the U.S. and Danish samples. The HiSQOL is a reliable and valid instrument to measure HS-specific HRQOL in clinical trials. © 2019 British Association of Dermatologists.

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