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Twenty-two points to consider for clinical trials in systemic sclerosis, based on EULAR standards.基于 EULAR 标准的系统性硬化症临床试验的 22 点考量。
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Taking charge of systemic sclerosis: a pilot study to assess the effectiveness of an internet self-management program.负责系统性硬化症：评估互联网自我管理方案有效性的初步研究。
Arthritis Care Res (Hoboken). 2014 May;66(5):778-82. doi: 10.1002/acr.22192.
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Responsiveness and minimally important difference for the patient-reported outcomes measurement information system (PROMIS) 20-item physical functioning short form in a prospective observational study of rheumatoid arthritis.类风湿关节炎前瞻性观察研究中患者报告结局测量信息系统（PROMIS）20项身体功能简表的反应性及最小重要差异
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Upper-extremity and mobility subdomains from the Patient-Reported Outcomes Measurement Information System (PROMIS) adult physical functioning item bank.患者报告的结局测量信息系统（PROMIS）成人身体功能项目库中的上肢和活动能力子领域。
Arch Phys Med Rehabil. 2013 Nov;94(11):2291-6. doi: 10.1016/j.apmr.2013.05.014. Epub 2013 Jun 8.
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The future of measuring patient-reported outcomes in rheumatology: Patient-Reported Outcomes Measurement Information System (PROMIS).风湿病中测量患者报告结局的未来：患者报告结局测量信息系统（PROMIS）。
Arthritis Care Res (Hoboken). 2011 Nov;63 Suppl 11(Suppl 11):S486-90. doi: 10.1002/acr.20581.
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Feasibility and construct validity of PROMIS and "legacy" instruments in an academic scleroderma clinic.在学术硬皮病诊所中，PROMIS 和“传统”工具的可行性和结构效度。
Value Health. 2012 Jan;15(1):128-34. doi: 10.1016/j.jval.2011.08.006. Epub 2011 Oct 22.
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Self-guided psychological treatment for depressive symptoms: a meta-analysis.自我指导的心理治疗对抑郁症状的疗效：一项荟萃分析。
PLoS One. 2011;6(6):e21274. doi: 10.1371/journal.pone.0021274. Epub 2011 Jun 21.
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Prevalence and correlates of sleep disturbance in systemic sclerosis--results from the UCLA scleroderma quality of life study.系统性硬化症患者睡眠障碍的患病率及其相关因素——来自加州大学洛杉矶分校硬皮病生活质量研究的结果。
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Clinical correlates of sleep problems in systemic sclerosis: the prominent role of pain.系统性硬化症患者睡眠问题的临床相关因素：疼痛的突出作用。
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Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS).与一般美国人群相比，慢性疾病与较差的健康相关生活质量相关，这是通过患者报告的结果测量信息系统（PROMIS）进行测量的。
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功能残疾及其他与健康相关的生活质量领域：系统性硬化症临床试验需考虑的要点

Functional disability and other health-related quality-of-life domains: points to consider for clinical trials in systemic sclerosis.

作者信息

Khanna Dinesh, Hays Ron D, Furst Daniel E

机构信息

Department of Medicine, University of Michigan Scleroderma Program, University of Michigan, Ann Arbor, MI.

Department of General Internal Medicine and Health Services Research.

出版信息

Rheumatology (Oxford). 2017 Sep 1;56(suppl_5):v17-v22. doi: 10.1093/rheumatology/kex193.

DOI:10.1093/rheumatology/kex193
PMID:28992164
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5850118/
Abstract

Patients with SSc have the highest mortality among the rheumatic diseases. In addition, SSc is associated with disfigurement, hand contractures, fatigue, poor sleep, severe RP with numbness and tingling of the fingers can lead to decrements in quality of life. This Points to Consider article provides practical considerations for design of trials for functional disability and other health-related quality-of-life issues.

摘要

硬皮病患者在风湿性疾病中死亡率最高。此外，硬皮病会导致容貌毁损、手部挛缩、疲劳、睡眠不佳，严重的雷诺现象伴有手指麻木和刺痛会导致生活质量下降。这篇“需考虑要点”文章为功能障碍及其他与健康相关的生活质量问题的试验设计提供了实际考量。