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Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research

Hidradenitis suppurativa is a chronic disease that disrupts patients’ physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hid...

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Autores principales: OTTEN, Marina, AUGUSTIN, Matthias, BLOME, Christine, TOPP, Janine, NIKLAUS, Marina, HILBRING, Caroline, BECHARA, Falk G., PINTER, Andreas, ZOUBOULIS, Christos C., ANZENGRUBER, Florian, KIRSTEN, Natalia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Medical Journals Sweden, on behalf of the Society for Publication of Acta Dermato-Venereologica 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9901329/
https://www.ncbi.nlm.nih.gov/pubmed/36129249
http://dx.doi.org/10.2340/actadv.v102.2485
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author OTTEN, Marina
AUGUSTIN, Matthias
BLOME, Christine
TOPP, Janine
NIKLAUS, Marina
HILBRING, Caroline
BECHARA, Falk G.
PINTER, Andreas
ZOUBOULIS, Christos C.
ANZENGRUBER, Florian
KIRSTEN, Natalia
author_facet OTTEN, Marina
AUGUSTIN, Matthias
BLOME, Christine
TOPP, Janine
NIKLAUS, Marina
HILBRING, Caroline
BECHARA, Falk G.
PINTER, Andreas
ZOUBOULIS, Christos C.
ANZENGRUBER, Florian
KIRSTEN, Natalia
author_sort OTTEN, Marina
collection PubMed
description Hidradenitis suppurativa is a chronic disease that disrupts patients’ physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0–4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach’s alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa.
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spelling pubmed-99013292023-02-08 Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research OTTEN, Marina AUGUSTIN, Matthias BLOME, Christine TOPP, Janine NIKLAUS, Marina HILBRING, Caroline BECHARA, Falk G. PINTER, Andreas ZOUBOULIS, Christos C. ANZENGRUBER, Florian KIRSTEN, Natalia Acta Derm Venereol Original Article Hidradenitis suppurativa is a chronic disease that disrupts patients’ physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0–4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach’s alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa. Medical Journals Sweden, on behalf of the Society for Publication of Acta Dermato-Venereologica 2023-01-31 /pmc/articles/PMC9901329/ /pubmed/36129249 http://dx.doi.org/10.2340/actadv.v102.2485 Text en © 2023 Acta Dermato-Venereologica https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License
spellingShingle Original Article
OTTEN, Marina
AUGUSTIN, Matthias
BLOME, Christine
TOPP, Janine
NIKLAUS, Marina
HILBRING, Caroline
BECHARA, Falk G.
PINTER, Andreas
ZOUBOULIS, Christos C.
ANZENGRUBER, Florian
KIRSTEN, Natalia
Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
title Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
title_full Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
title_fullStr Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
title_full_unstemmed Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
title_short Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
title_sort measuring quality of life in hidradenitis suppurativa: development and validation of a disease-specific patient-reported outcome measure for practice and research
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9901329/
https://www.ncbi.nlm.nih.gov/pubmed/36129249
http://dx.doi.org/10.2340/actadv.v102.2485
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