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: | Schools > Medicine |
| Publisher: | Wiley |
| ISSN: | 0007-0963 |
| Date of First Compliant Deposit: | 22 November 2019 |
| Date of Acceptance: | 8 November 2019 |
| Last Modified: | 24 Nov 2024 01:30 |
| URI: | https://orca.cardiff.ac.uk/id/eprint/127046 |
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