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

Kirby, J.S., Thorlacius, L., Villumsen, B., Ingram, J.R. ORCID: https://orcid.org/0000-0002-5257-1142, Garg, A., Christensen, K.B., Butt, M., Esmann, S., Tan, J. and Jemec, G.B.E. 2020. The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials. British Journal of Dermatology 183 (2) , pp. 340-348. 10.1111/bjd.18692

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Abstract

Background 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. Objective To develop and validate the Hidradenitis Suppurtiva Quality Of Life (HiSQOL©) scale, for clinical trial measurement of HS‐specific HRQOL. Methods Stage 1: Qualitative concept elicitation (CE) interviews were conducted with HS patients in Denmark (DK) (n = 21) and the United States (US) (n=21). Stage 2: Cognitive debriefing (CD) interviews were performed with US HS patients (n = 30) and Danish HS patients (n=30). Stage 3: Observational study of 222 HS patients in the US was conducted for item reduction, measure validation and assessment of psychometric properties. Stage 4: Observational study of 215 HS patients 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. Results In CE, 99 items were generated and reduced to 41 after removing duplicates. In CD, 2 items were added and 1 items 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 US and DK samples.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Publisher:	Wiley
ISSN:	0007-0963
Date of First Compliant Deposit:	22 November 2019
Date of Acceptance:	8 November 2019
Last Modified:	07 Nov 2023 17:22
URI:	https://orca.cardiff.ac.uk/id/eprint/127046

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