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

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

Research output: Contribution to journalArticlepeer-review


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.

Original languageEnglish (US)
JournalBritish Journal of Dermatology
StateAccepted/In press - 2020

All Science Journal Classification (ASJC) codes

  • Dermatology

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