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本文引用的文献

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OMERACT 2018 Modified Patient-reported Outcome Domain Core Set in the Life Impact Area for Adult Idiopathic Inflammatory Myopathies.OMERACT 2018 成人特发性炎性肌病生活影响领域改良患者报告结局域核心集。
J Rheumatol. 2019 Oct;46(10):1351-1354. doi: 10.3899/jrheum.181065. Epub 2019 Feb 15.
2
Responsiveness of Patient-Reported Outcomes Measurement Information System Measures in Rheumatoid Arthritis Patients Starting or Switching a Disease-Modifying Antirheumatic Drug.类风湿关节炎患者起始或转换疾病修正抗风湿药物时患者报告结局测量信息系统测量指标的反应性。
Arthritis Care Res (Hoboken). 2019 Apr;71(4):521-529. doi: 10.1002/acr.23617.
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Update on outcome assessment in myositis.肌炎结局评估的最新进展。
Nat Rev Rheumatol. 2018 May;14(5):303-318. doi: 10.1038/nrrheum.2018.33. Epub 2018 Apr 12.
4
Efficacy and safety of adrenocorticotropic hormone gel in refractory dermatomyositis and polymyositis.促肾上腺皮质激素凝胶治疗难治性皮肌炎和多发性肌炎的疗效和安全性。
Ann Rheum Dis. 2018 May;77(5):720-727. doi: 10.1136/annrheumdis-2017-212047. Epub 2017 Dec 13.
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Establishing clinical severity for PROMIS measures in adult patients with rheumatic diseases.确立风湿性疾病成年患者 PROMIS 测量的临床严重程度。
Qual Life Res. 2018 Mar;27(3):755-764. doi: 10.1007/s11136-017-1709-z. Epub 2017 Oct 5.
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Making Patients and Doctors Happier - The Potential of Patient-Reported Outcomes.让患者和医生更满意——患者报告结局的潜力
N Engl J Med. 2017 Oct 5;377(14):1309-1312. doi: 10.1056/NEJMp1707537.
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Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 4: patient-reported outcomes can inform clinical decision making in chronic care.《蒙特利尔患者报告结局（PROs）应用系列协议 - 论文4：患者报告结局可为慢性病护理中的临床决策提供依据》
J Clin Epidemiol. 2017 Sep;89:136-141. doi: 10.1016/j.jclinepi.2017.04.014. Epub 2017 Apr 20.
8
2016 American College of Rheumatology/European League Against Rheumatism Criteria for Minimal, Moderate, and Major Clinical Response in Adult Dermatomyositis and Polymyositis: An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation Collaborative Initiative.2016 年美国风湿病学会/欧洲抗风湿病联盟成人皮肌炎和多发性肌炎的微小、中度和主要临床反应标准：国际肌炎评估和临床研究组/儿科风湿病国际临床试验组织协作倡议。
Arthritis Rheumatol. 2017 May;69(5):898-910. doi: 10.1002/art.40064. Epub 2017 Apr 6.
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Health-Related Quality of Life (HRQoL) in Idiopathic Inflammatory Myopathy: A Systematic Review.特发性炎性肌病的健康相关生活质量：一项系统综述
PLoS One. 2016 Aug 9;11(8):e0160753. doi: 10.1371/journal.pone.0160753. eCollection 2016.
10
Reliability and Validity of Selected PROMIS Measures in People with Rheumatoid Arthritis.类风湿关节炎患者中选定的患者报告结果测量信息系统（PROMIS）指标的信度和效度
PLoS One. 2015 Sep 17;10(9):e0138543. doi: 10.1371/journal.pone.0138543. eCollection 2015.

成人特发性炎性肌病的患者报告结局。

Patient-Reported Outcomes in Adult Idiopathic Inflammatory Myopathies.

机构信息

The Johns Hopkins University School of Medicine, 5200 Eastern Avenue, MFL Building, Center Tower, Suite 4100, Baltimore, MD, 21224, USA.

出版信息

Curr Rheumatol Rep. 2019 Nov 19;21(11):62. doi: 10.1007/s11926-019-0862-5.

DOI:10.1007/s11926-019-0862-5
PMID:31741079
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7050440/
Abstract

PURPOSE OF REVIEW

Idiopathic inflammatory myopathies (IIM) have considerable impact on patient symptoms and quality of life. We have reviewed the evolution of patient-centered care and use of patient-reported outcome measures (PROMs) for adults with IIM.

RECENT FINDINGS

Use of PROMs in myositis care and research is limited, although the importance of incorporation into routine practice and trials has become increasingly recognized. Several key domains/measures have been identified including the patient global assessment of disease activity, physical function as measured by the health assessment questionnaire-disability index (HAQ-DI), Short Form Health Survey-36 (SF-36), or the Patient-Reported Outcome Measurement Information System ® (PROMIS®) in adult IIM. Data are limited for these instruments concerning their reliability, content and construct validity, and responsiveness. Incorporation of the patient perspective into clinical care and research may be used to address the unmet/unaddressed needs of the patient living with myositis. Several ongoing projects aim to bring validated PROMs to the IIM community.

摘要

目的综述

特发性炎性肌病（IIM）对患者的症状和生活质量有很大影响。我们回顾了以患者为中心的护理的发展和成人肌炎患者使用患者报告结局测量（PROM）。

最近的发现

尽管将 PROM 纳入常规实践和试验的重要性已得到越来越多的认可，但在肌炎的护理和研究中使用 PROM 的情况有限。已经确定了几个关键的领域/措施，包括疾病活动的患者整体评估、健康评估问卷残疾指数（HAQ-DI）、简短健康调查-36（SF-36）或成人 IIM 中的患者报告结果测量信息系统（PROMIS®）测量的身体功能。这些工具的可靠性、内容和结构有效性以及反应性的数据有限。将患者的观点纳入临床护理和研究中，可能有助于解决患有肌炎的患者的未满足/未解决的需求。一些正在进行的项目旨在为 IIM 社区带来经过验证的 PROM。