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本文引用的文献

1
Gastrointestinal involvement in systemic sclerosis: An updated review.系统性硬化症的胃肠道受累:最新综述。
Medicine (Baltimore). 2022 Nov 11;101(45):e31780. doi: 10.1097/MD.0000000000031780.
2
How do systemic sclerosis manifestations influence patients' lives? Results from a survey on patients and caregivers.系统性硬化症的表现如何影响患者的生活?一项针对患者和护理人员的调查结果。
Curr Med Res Opin. 2021 Nov;37(sup2):5-15. doi: 10.1080/03007995.2021.1992371.
3
Fatigue Predicts Future Reduced Social Participation, not Reduced Physical Function or Quality of Life in People with Systemic Sclerosis.疲劳预示系统性硬化症患者未来社会参与度降低,而非身体功能或生活质量下降。
J Scleroderma Relat Disord. 2021 Jun 1;6(2):187-193. doi: 10.1177/2397198320965383. Epub 2020 Sep 20.
4
Fatigue and Its Association With Social Participation, Functioning, and Quality of Life in Systemic Sclerosis.系统性硬化症患者的疲劳及其与社会参与、功能和生活质量的关系。
Arthritis Care Res (Hoboken). 2021 Mar;73(3):415-422. doi: 10.1002/acr.24122. Epub 2021 Feb 5.
5
The impact of systemic sclerosis on health-related quality of life assessed by SF-36: A systematic review and meta-analysis.通过SF-36评估系统性硬化症对健康相关生活质量的影响:一项系统评价和荟萃分析。
Int J Rheum Dis. 2018 Nov;21(11):1884-1893. doi: 10.1111/1756-185X.13438. Epub 2018 Nov 14.
6
The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts.硬皮病患者为中心干预网络队列:基线临床特征,并与其他大型硬皮病队列比较。
Rheumatology (Oxford). 2018 Sep 1;57(9):1623-1631. doi: 10.1093/rheumatology/key139.
7
PROMIS-29 v2.0 profile physical and mental health summary scores.PROMIS-29 v2.0 概况身心健康综合评分。
Qual Life Res. 2018 Jul;27(7):1885-1891. doi: 10.1007/s11136-018-1842-3. Epub 2018 Mar 22.
8
Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort Study.患者报告结局测量信息系统29在硬皮病中的表现:一项硬皮病患者中心干预网络队列研究。
Rheumatology (Oxford). 2017 Aug 1;56(8):1302-1311. doi: 10.1093/rheumatology/kex055.
9
Performance of the Patient-Reported Outcomes Measurement Information System 29-Item Profile in Rheumatoid Arthritis, Osteoarthritis, Fibromyalgia, and Systemic Lupus Erythematosus.患者报告结局测量信息系统29项量表在类风湿关节炎、骨关节炎、纤维肌痛和系统性红斑狼疮中的表现
Arthritis Care Res (Hoboken). 2017 Sep;69(9):1312-1321. doi: 10.1002/acr.23183. Epub 2017 Aug 8.
10
The association of sociodemographic and objectively-assessed disease variables with fatigue in systemic sclerosis: an analysis of 785 Canadian Scleroderma Research Group Registry patients.社会人口统计学和客观评估的疾病变量与系统性硬化症疲劳的关联:对785名加拿大硬皮病研究组登记患者的分析
Clin Rheumatol. 2017 Feb;36(2):373-379. doi: 10.1007/s10067-016-3501-9. Epub 2016 Dec 10.

与系统性硬化症患者社会角色和活动满意度相关的因素:硬皮病患者为中心的干预网络(SPIN)队列横断面研究。

Factors associated with satisfaction with social roles and activities among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) cohort cross-sectional study.

机构信息

Lady Davis Institute for Medical Research, Montreal, Québec, Canada.

Department of Psychiatry, McGill University, Montreal, Québec, Canada.

出版信息

RMD Open. 2024 Feb 29;10(1):e003876. doi: 10.1136/rmdopen-2023-003876.

DOI:10.1136/rmdopen-2023-003876
PMID:38428973
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10910418/
Abstract

OBJECTIVE

The objectives were to (1) compare satisfaction with social roles and activities in a large multinational systemic sclerosis (SSc) cohort to general population normative data and (2) identify sociodemographic, lifestyle and SSc disease factors associated with satisfaction with social roles and activities.

METHODS

Participants in the Scleroderma Patient-centered Intervention Network Cohort completed the Patient Reported Outcomes Information System Version 2 satisfaction with social roles and activities domain questionnaire. Multivariable regression was used to assess associations with sociodemographic, lifestyle and disease factors.

RESULTS

Among 2385 participants, mean satisfaction with social roles and activities T-score (48.1, SD=9.9) was slightly lower than the US general population (mean=50, SD=10). Factors independently associated with satisfaction were years of education (0.54 per SD, 95% CI 0.14 to 0.93); non-White race or ethnicity (-1.13, 95% CI -2.18 to -0.08); living in Canada (-1.33, 95% CI -2.40 to -0.26 (reference USA)) or the UK (-2.49, 95% CI -3.92 to -1.06); body mass index (-1.08 per SD, 95% CI -1.47 to -0.69); gastrointestinal involvement (-3.16, 95% CI -4.27 to -2.05); digital ulcers (-1.90, 95% CI -3.05 to -0.76); moderate (-1.62, 95% CI -2.78 to -0.45) or severe (-2.26, 95% CI -3.99 to -0.52) small joint contractures; interstitial lung disease (-1.11, 95% CI -1.97 to -0.25); pulmonary arterial hypertension (-2.69, 95% CI -4.08 to -1.30); rheumatoid arthritis (-2.51, 95% CI -4.28 to -0.73); and Sjogren's syndrome (-2.42, 95% CI -3.96 to -0.88).

CONCLUSION

Mean satisfaction with social roles and activities is slightly lower in SSc than the general population and associated with multiple sociodemographic and disease factors.

摘要

目的

(1)比较大型跨国系统性硬化症(SSc)队列中社会角色和活动的满意度与一般人群的规范数据;(2)确定与社会角色和活动满意度相关的社会人口学、生活方式和 SSc 疾病因素。

方法

Scleroderma Patient-centered Intervention Network 队列的参与者完成了患者报告的结果信息系统第 2 版社会角色和活动领域问卷。多变量回归用于评估与社会人口学、生活方式和疾病因素的关联。

结果

在 2385 名参与者中,社会角色和活动满意度 T 评分(48.1,SD=9.9)略低于美国一般人群(平均=50,SD=10)。与满意度独立相关的因素包括受教育年限(每标准差增加 0.54,95%CI 0.14 至 0.93);非白种人或少数民族(-1.13,95%CI -2.18 至 -0.08);居住在加拿大(-1.33,95%CI -2.40 至 -0.26(参考美国))或英国(-2.49,95%CI -3.92 至 -1.06);体重指数(每标准差减少 1.08,95%CI -1.47 至 -0.69);胃肠道受累(-3.16,95%CI -4.27 至 -2.05);手指溃疡(-1.90,95%CI -3.05 至 -0.76);中度(-1.62,95%CI -2.78 至 -0.45)或重度(-2.26,95%CI -3.99 至 -0.52)小关节挛缩;间质性肺病(-1.11,95%CI -1.97 至 -0.25);肺动脉高压(-2.69,95%CI -4.08 至 -1.30);类风湿关节炎(-2.51,95%CI -4.28 至 -0.73);和干燥综合征(-2.42,95%CI -3.96 至 -0.88)。

结论

SSc 患者的社会角色和活动满意度平均略低于一般人群,与多种社会人口学和疾病因素相关。