Spierings, J., Welsing, P.M.J., Colak, S. et al. (7 more authors) (2024) Self-reported skin severity and quality of life in systemic sclerosis: multicentre validation of PASTUL. Rheumatology. keae561. ISSN 1462-0324
Abstract
Objectives
The aim of this study was to validate the Patient self-Assessment of Skin Thickness in Upper Limb (PASTUL) questionnaire in SSc and assess impact of skin involvement on health-related quality of life (HRQoL).
Methods
Participants were included in four UK centres. PASTUL specifies a grading of skin at eight sites corresponding to the modified Rodnan Skin Score (mRSS). Construct validity was assessed by comparing PASTUL scores with mRSS. HRQoL was evaluated with EuroQoL 5 dimension 5 levels (EQ5D5L) and Leeds SSc QoL questionnaires. Additionally, correlation between PASTUL and Scleroderma Skin Patient-Reported Outcome (SSPRO) was explored. Follow-up was 12 months.
Results
In total, 196 participants were included, mean age was 56.4 years (s.d. 13.9), 80.6% female (n = 158), mean disease duration 11.9 years (s.d. 9.9), 110 (56.1%) had lcSSc and 81 (41.3%) dcSSc. PASTUL and upper limb mRSS were well correlated at baseline, 6 and 12 months [intraclass correlation coefficients (ICC) = 0.67, 0.78 and 0.62, P < 0.001]. Test–retest reliability was good (ICC = 0.83, P < 0.001). There was a stronger correlation between PASTUL and upper limb mRSS in dcSSc compared with lcSSc (0.69 vs 0.51, P < 0.001). In participants with early disease (<4 years) PASTUL was moderately correlated with HRQoL (r = 0.53, P < 0.001); correlations were weaker in the whole group. Mean time to do the PASTUL self-assessment was 5.0 min (s.d. 3.7).
Conclusion
PASTUL is a feasible outcome tool that adds to assessments such as SSPRO. Skin thickening is correlated with HRQoL, particularly in early disease.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2024. Published by Oxford University Press on behalf of the British Society for Rheumatology. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. |
Keywords: | systemic sclerosis, scleroderma, skin, patient reported outcome, quality of life |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Institute of Rheumatology & Musculoskeletal Medicine (LIRMM) (Leeds) > Inflammatory Arthritis (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 02 Dec 2024 14:20 |
Last Modified: | 02 Dec 2024 14:20 |
Published Version: | https://academic.oup.com/rheumatology/advance-arti... |
Status: | Published online |
Publisher: | Oxford University Press |
Identification Number: | 10.1093/rheumatology/keae561 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:220281 |
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