eprintid: 10198684
rev_number: 7
eprint_status: archive
userid: 699
dir: disk0/10/19/86/84
datestamp: 2024-10-21 12:29:05
lastmod: 2024-10-21 12:29:05
status_changed: 2024-10-21 12:29:05
type: article
metadata_visibility: show
sword_depositor: 699
creators_name: Spierings, Julia
creators_name: Welsing, Paco MJ
creators_name: Colak, Seda
creators_name: Quah, Helen
creators_name: Del Galdo, Francesco
creators_name: Herrick, Ariane L
creators_name: Hughes, Michael
creators_name: Pauling, John D
creators_name: Ong, Voon H
creators_name: Denton, Christopher P
title: Self-reported skin severity and quality of life in systemic sclerosis: multicentre validation of PASTUL
ispublished: inpress
divisions: UCL
divisions: B02
divisions: C10
divisions: D17
divisions: G90
keywords: patient reported outcome, quality of life, scleroderma, skin, systemic sclerosis
note: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
abstract: OBJECTIVES: The aim of this study was to validate the Patient self-Assessment of Skin Thickness in Upper Limb questionnaire (PASTUL) in systemic sclerosis (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 8 sites corresponding to the modified Rodnan Skin Score (mRSS). Construct validity was assessed by comparing PASTUL scores with mRSS. HRQoL was evaluated with EQ5D5L and Leeds SSc HRQoL 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 (SD 13.9), 80.6% female (n = 158), mean disease duration 11.9 years (SD 9.9), 110 (56.1%) had limited cutaneous (lcSSc) and 81 (41.3%) diffuse cutaneous SSc (dcSSc). PASTUL and upper limb mRSS were well correlated at baseline, 6 and 12 months (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 (SD 3.7). CONCLUSION: PASTUL is a feasible outcome tool that adds to assessments as SSPRO. Skin thickening is correlated with HRQoL, particularly in early disease.
date: 2024-10-14
date_type: published
publisher: Oxford University Press (OUP)
official_url: http://dx.doi.org/10.1093/rheumatology/keae561
full_text_type: other
language: eng
verified: verified_manual
elements_id: 2327846
doi: 10.1093/rheumatology/keae561
medium: Print-Electronic
pii: 7821206
lyricists_name: Denton, Christopher
lyricists_name: Ong, Voon
lyricists_id: CPDEN87
lyricists_id: VONGX45
actors_name: Bracey, Alan
actors_id: ABBRA90
actors_role: owner
full_text_status: restricted
publication: Rheumatology
article_number: keae561
event_location: England
issn: 1462-0324
citation:        Spierings, Julia;    Welsing, Paco MJ;    Colak, Seda;    Quah, Helen;    Del Galdo, Francesco;    Herrick, Ariane L;    Hughes, Michael;             ... Denton, Christopher P; + view all <#>        Spierings, Julia;  Welsing, Paco MJ;  Colak, Seda;  Quah, Helen;  Del Galdo, Francesco;  Herrick, Ariane L;  Hughes, Michael;  Pauling, John D;  Ong, Voon H;  Denton, Christopher P;   - view fewer <#>    (2024)    Self-reported skin severity and quality of life in systemic sclerosis: multicentre validation of PASTUL.                   Rheumatology      , Article keae561.  10.1093/rheumatology/keae561 <https://doi.org/10.1093/rheumatology%2Fkeae561>.    (In press).   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/10198684/1/keae561.pdf