Spierings Julia, Welsing Paco M J, Colak Seda, Quah Helen, Del Galdo Francesco, Herrick Ariane L, Hughes Michael, Pauling John D, Ong Voon H, Denton Christopher P
Centre for Rheumatology and Connective Tissue Diseases, UCL Medical School Royal Free Campus, London, UK.
Department of Rheumatology & Clinical Immunology, University Medical Centre Utrecht, Utrecht, The Netherlands.
Rheumatology (Oxford). 2025 May 1;64(5):2802-2809. doi: 10.1093/rheumatology/keae561.
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).
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.
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).
PASTUL is a feasible outcome tool that adds to assessments such as SSPRO. Skin thickening is correlated with HRQoL, particularly in early disease.
本研究旨在验证上肢皮肤厚度患者自我评估（PASTUL）问卷在系统性硬化症（SSc）中的有效性，并评估皮肤受累对健康相关生活质量（HRQoL）的影响。
参与者纳入英国的四个中心。PASTUL对与改良罗德南皮肤评分（mRSS）相对应的八个部位的皮肤进行分级。通过比较PASTUL评分与mRSS来评估结构效度。使用欧洲五维健康量表（EQ5D5L）和利兹SSc生活质量问卷评估HRQoL。此外，还探讨了PASTUL与硬皮病皮肤患者报告结局（SSPRO）之间的相关性。随访时间为12个月。
总共纳入196名参与者，平均年龄为56.4岁（标准差13.9），80.6%为女性（n = 158），平均病程11.9年（标准差9.9），110名（56.1%）患有局限性皮肤型系统性硬化症（lcSSc），81名（41.3%）患有弥漫性皮肤型系统性硬化症（dcSSc）。PASTUL与上肢mRSS在基线、6个月和12个月时相关性良好[组内相关系数（ICC）分别为0.67、0.78和0.62，P < 0.001]。重测信度良好（ICC = 0.83，P < 0.001）。与lcSSc相比，dcSSc中PASTUL与上肢mRSS的相关性更强（0.69对0.51，P < 0.001）。在疾病早期（<4年）的参与者中，PASTUL与HRQoL中度相关（r = 0.53，P < 0.001）；在整个组中相关性较弱。完成PASTUL自我评估的平均时间为5.0分钟（标准差3.7）。
PASTUL是一种可行的结局工具，可补充SSPRO等评估。皮肤增厚与HRQoL相关，尤其是在疾病早期。
