Alibaz-Oner Fatma, Sreih Antoine G, Merkel Peter A, Direskeneli Haner
Marmara university, school of medicine, division of rheumatology, Istanbul, Turkey.
University of Pennsylvania, division of rheumatology, Philadelphia, PA, USA.
Presse Med. 2017 Jul-Aug;46(7-8 Pt 2):e225-e227. doi: 10.1016/j.lpm.2017.03.023. Epub 2017 Jul 26.
Patient-reported outcomes (PROs) are assessment tools coming directly from patients about their feelings, perceptions, health-related functions, and treatment effects without interpretation by health-care providers. There is a global interest for more "patient-centered care" and PROs in rheumatology. Assessment of disease impact through patient-reported outcome (PRO) measures is a key element for clinical care and clinical research in Takayasu's arteritis (TAK). Currently there are no disease-specific PRO measures to assess quality of life for patients with TAK. Impaired health-related quality of life (HRQoL), functional status, increased anxiety, and depression were shown in patients with TAK in a few studies with generic PRO instruments such as the Short Form-36. However, it is difficult to capture disease-specific effects on patients' daily life and quality of life with these generic tools. There are ongoing efforts of Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group to develop disease-specific outcome measures in TAK.
患者报告结局(PROs)是直接来自患者的评估工具,用于描述他们的感受、认知、健康相关功能和治疗效果,无需医疗保健提供者进行解读。在风湿病领域,全球都对更多的“以患者为中心的护理”和患者报告结局感兴趣。通过患者报告结局(PRO)测量来评估疾病影响是大动脉炎(TAK)临床护理和临床研究的关键要素。目前,尚无针对TAK患者生活质量评估的疾病特异性PRO测量方法。在一些使用通用PRO工具(如简短健康调查问卷简表36)的研究中,TAK患者表现出健康相关生活质量(HRQoL)受损、功能状态下降、焦虑和抑郁增加。然而,使用这些通用工具难以捕捉疾病对患者日常生活和生活质量的特异性影响。风湿病结局评估(OMERACT)血管炎工作组正在努力开发TAK的疾病特异性结局测量方法。