系统性硬化症（硬皮病）患者报告的结局指标

Patient-Reported Outcome Measures in Systemic Sclerosis (Scleroderma).

作者信息

Pellar Russell E, Tingey Theresa M, Pope Janet Elizabeth

机构信息

Faculty of Medicine, SJHC, Schulich School of Medicine and Dentistry, University of Western Ontario, c/o Rheumatology, 268 Grosvenor Street, London, Ontario N6A 4V2, Canada.

University of Western Ontario, London, Ontario, Canada; Rheumatology, Department of Medicine, St. Joseph's Health Care, 268 Grosvenor Street, London, Ontario N6A 4V2, Canada.

出版信息

Rheum Dis Clin North Am. 2016 May;42(2):301-16. doi: 10.1016/j.rdc.2016.01.003. Epub 2016 Mar 16.

DOI:10.1016/j.rdc.2016.01.003

PMID:27133491

Abstract

Scleroderma (systemic sclerosis) is a rare autoimmune connective tissue disease that can damage multiple organs and reduce quality of life. Patient-reported outcome measures capture the patient's perspective. Some measures are specific to systemic sclerosis and others are general. Patient-reported outcomes in systemic sclerosis are important to aid in understanding the impact of systemic sclerosis on patients.

摘要

硬皮病（系统性硬化症）是一种罕见的自身免疫性结缔组织疾病，可损害多个器官并降低生活质量。患者报告的结局指标反映了患者的观点。有些指标是系统性硬化症特有的，有些则是通用的。系统性硬化症患者报告的结局对于帮助理解系统性硬化症对患者的影响很重要。