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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.

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。

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