Validation of global item for assessing impact on quality of life of patients with hidradenitis suppurativa*

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  • J. S. Kirby
  • B. Hereford
  • L. Thorlacius
  • B. Villumsen
  • J. R. Ingram
  • A. Garg
  • M. Butt
  • S. Esmann
  • T. King
  • J. Tan
  • Jemec, Gregor

Background: Hidradenitis suppurativa (HS) is a chronic inflammatory disease. The HS core outcome set calls for a patient global assessment (PtGA). Objectives: To assess the validity, reliability and responsiveness of a candidate single-item PtGA for HS-specific health-related quality of life (HRQoL). Methods: Cognitive debriefing interviews were conducted with patients with HS in Denmark and the USA. A cross-sectional observational study was done with adults with HS in the USA and Denmark. Candidate PtGA item, demographic items and multiple patient-reported scales – the Hidradenitis Suppurativa Quality of Life (HiSQOL), Dermatology Life Quality Index (DLQI) and numerical rating scale (NRS) for pain – were concurrently administered to evaluate convergent and known-groups validity. Scales with a single-item assessment of change were readministered 24–72 h later, to evaluate reliability and responsiveness. Results: After cognitive debriefing, the candidate PtGA for HS-specific HRQoL was finalized with five response levels. Convergent validity of the PtGA was supported by significant correlations with HiSQOL score [r = 0·79, 95% confidence interval (CI) 0·75–0·82] and DLQI (r = 0·78, 95% CI 0·74–0·82). The PtGA displayed known-groups validity with DLQI score bands based on significance of an anova (P < 0·001). Good test–retest reliability was supported by the intraclass correlation coefficient (0·82, 95% CI 0·78–0·85) for those who reported stable HS. Responsiveness was assessed by differences in PtGA score against a patient-reported assessment of change, which showed significant differences towards improvement. Conclusions: The single-item PtGA exhibits reliability, validity and responsiveness in assessing HS-specific HRQoL in HS, making it a good provisional tool for HS clinical research.

OriginalsprogEngelsk
TidsskriftBritish Journal of Dermatology
Vol/bind184
Udgave nummer4
Sider (fra-til)681-687
Antal sider7
ISSN0007-0963
DOI
StatusUdgivet - 2021

Bibliografisk note

Funding Information:
J.S.K. received funding from the Agency for Healthcare Research and Quality for this research (K08HS024585). Use of REDCap through Penn State is supported by National Institutes of Health/National Center for Advancing Translational Sciences Grant Number UL1 TR000127 and UL1 TR002014 through The Penn State Clinical and Translational Research Institute, Pennsylvania State University Clinical and Translational Science Award. J.R.I. received funding from Health and Care Research Wales (Health Fellowship 14‐08).

Publisher Copyright:
© 2020 British Association of Dermatologists

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