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.
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。
相似文献
1
Functional disability and other health-related quality-of-life domains: points to consider for clinical trials in systemic sclerosis.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
Rheumatology (Oxford). 2017 Sep 1;56(suppl_5):v17-v22. doi: 10.1093/rheumatology/kex193.
2
Points to consider for designing trials in systemic sclerosis patients with arthritic involvement.在患有关节炎的系统性硬化症患者中进行试验设计时需考虑的要点。
Rheumatology (Oxford). 2017 Sep 1;56(suppl_5):v23-v26. doi: 10.1093/rheumatology/kex194.
3
Systemic sclerosis: rehabilitation as a tool to cope with disability.系统性硬化症：将康复作为应对残疾的一种手段。
Clin Exp Rheumatol. 2016 Sep-Oct;34 Suppl 100(5):162-169. Epub 2016 Jul 4.
4
Quality of life and functional status in systemic sclerosis compared to other rheumatic diseases.与其他风湿性疾病相比，系统性硬化症患者的生活质量和功能状态。
J Rheumatol. 2006 Jun;33(6):1117-22.
5
Measuring disease activity and functional status in patients with scleroderma and Raynaud's phenomenon.测量硬皮病和雷诺现象患者的疾病活动度和功能状态。
Arthritis Rheum. 2002 Sep;46(9):2410-20. doi: 10.1002/art.10486.
6
Impact of digital ulcers on disability and health-related quality of life in systemic sclerosis.系统性硬化症患者的数字化溃疡对残疾和健康相关生活质量的影响。
Ann Rheum Dis. 2010 Jan;69(1):214-7. doi: 10.1136/ard.2008.094193.
7
Telemedicine applied to kinesiotherapy for hand dysfunction in patients with systemic sclerosis and rheumatoid arthritis: recovery of movement and telemonitoring technology.远程医疗应用于系统性硬化症和类风湿关节炎患者手部功能障碍的运动疗法：运动恢复与远程监测技术
J Rheumatol. 2014 Jul;41(7):1324-33. doi: 10.3899/jrheum.130912. Epub 2014 Jun 1.
8
Validation of French version of the Scleroderma Health Assessment Questionnaire (SSc HAQ).硬皮病健康评估问卷（SSc HAQ）法语版的验证
Clin Rheumatol. 2005 Feb;24(1):3-10. doi: 10.1007/s10067-004-0942-3. Epub 2004 Jun 23.
9
Pain, fatigue and hand function closely correlated to work ability and employment status in systemic sclerosis.疼痛、疲劳和手部功能与系统性硬化症患者的工作能力和就业状况密切相关。
Rheumatology (Oxford). 2010 Sep;49(9):1739-46. doi: 10.1093/rheumatology/keq145. Epub 2010 May 28.
10
The Impact of Pain and Itch on Functioning and Health-Related Quality of Life in Systemic Sclerosis: An Exploratory Study.疼痛和瘙痒对系统性硬化症患者功能及健康相关生活质量的影响：一项探索性研究。
J Pain Symptom Manage. 2016 Jul;52(1):43-53. doi: 10.1016/j.jpainsymman.2015.12.314. Epub 2016 Feb 11.
引用本文的文献
1
Patient perception of disease burden in diffuse cutaneous systemic sclerosis.弥漫性皮肤系统性硬化症患者对疾病负担的认知
J Scleroderma Relat Disord. 2020 Feb;5(1):66-76. doi: 10.1177/2397198319866615. Epub 2019 Aug 21.
2
Microangiopathy in Inflammatory Diseases-Strategies in Surgery of the Lower Extremity.炎症性疾病中的微血管病变——下肢手术策略
Life (Basel). 2022 Jan 28;12(2):200. doi: 10.3390/life12020200.
3
Room for improvement in non-pharmacological systemic sclerosis care? - a cross-sectional online survey of 650 patients.非药物性系统性硬化症护理是否有改进空间？——对650名患者的横断面在线调查
BMC Rheumatol. 2020 Jul 31;4:43. doi: 10.1186/s41927-020-00142-7. eCollection 2020.
4
Treatment With Mycophenolate and Cyclophosphamide Leads to Clinically Meaningful Improvements in Patient-Reported Outcomes in Scleroderma Lung Disease: Results of Scleroderma Lung Study II.霉酚酸酯和环磷酰胺治疗可使硬皮病肺病患者报告的结局有临床意义的改善：硬皮病肺病研究II的结果
ACR Open Rheumatol. 2020 Jun;2(6):362-370. doi: 10.1002/acr2.11125. Epub 2020 May 20.
5
A patient-centered approach to the burden of symptoms in patients with scleroderma treated with Bosentan: A prospective single-center observational study.以患者为中心探讨波生坦治疗硬皮病患者的症状负担：一项前瞻性单中心观察性研究。
Exp Ther Med. 2020 Mar;19(3):1739-1746. doi: 10.3892/etm.2019.8361. Epub 2019 Dec 20.
6
Systemic sclerosis: state of the art on clinical practice guidelines.系统性硬化症：临床实践指南的最新进展
RMD Open. 2018 Oct 18;4(Suppl 1):e000782. doi: 10.1136/rmdopen-2018-000782. eCollection 2018.
7
Occupational Therapy Treatment to Improve Upper Extremity Function in Individuals with Early Systemic Sclerosis: A Pilot Study.职业治疗改善早期系统性硬化症患者上肢功能：一项初步研究。
Arthritis Care Res (Hoboken). 2018 Nov;70(11):1653-1660. doi: 10.1002/acr.23522.
本文引用的文献
1
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。
Rheumatology (Oxford). 2015 Jan;54(1):144-51. doi: 10.1093/rheumatology/keu288. Epub 2014 Aug 13.
2
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.
3
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
Ann Rheum Dis. 2015 Jan;74(1):104-7. doi: 10.1136/annrheumdis-2013-204053. Epub 2013 Oct 4.
4
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.
5
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.
6
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.
7
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.
8
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。
Rheumatology (Oxford). 2011 Jul;50(7):1280-7. doi: 10.1093/rheumatology/ker020. Epub 2011 Feb 15.
9
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。
Rheumatology (Oxford). 2011 May;50(5):921-5. doi: 10.1093/rheumatology/keq411. Epub 2010 Dec 17.
10
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。
J Clin Epidemiol. 2010 Nov;63(11):1195-204. doi: 10.1016/j.jclinepi.2010.04.012. Epub 2010 Aug 5.
Zotero 插件