Roydhouse Jessica K, Wilson Ira B
Department of Health Services, Policy, and Practice, School of Public Health, Brown University, 121 S. Main Street, Providence, RI, 02912, USA.
Qual Life Res. 2017 Aug;26(8):1925-1954. doi: 10.1007/s11136-017-1540-6. Epub 2017 Mar 14.
In surveys and in research, proxies such as family members may be used to assess patient health-related quality of life. The aim of this research is to help cancer researchers select a validated health-related quality of life tool if they anticipate using proxy-reported data.
Systematic review and methodological appraisal of studies examining the concordance of paired adult cancer patient and proxy responses for multidimensional, validated HRQOL tools. We searched PubMed, CINAHL, PsycINFO and perused bibliographies of reviewed papers. We reviewed concordance assessment methods, results, and associated factors for each validated tool.
A total of 32 papers reporting on 29 study populations were included. Most papers were cross-sectional (N = 20) and used disease-specific tools (N = 19), primarily the FACT and EORTC. Patient and proxy mean scores were similar on average for tools and scales, with most mean differences <10 points but large standard deviations. Average ICCs for the FACT and EORTC ranged from 0.35 to 0.62, depending on the scale. Few papers (N = 15) evaluated factors associated with concordance, and results and measurement approaches were inconsistent. The EORTC was the most commonly evaluated disease-specific tool (N = 5 papers). For generic tools, both concordance and associated factor information was most commonly available for the COOP/WONCA (N = 3 papers). The MQOL was the most frequently evaluated end-of-life tool (N = 3 papers).
Proxy and patient scores are similar on average, but there is large, clinically important residual variability. The evidence base is strongest for the EORTC (disease-specific tools), COOP/WONCA (generic tools), and MQOL (end-of-life-specific tools).
在调查和研究中，可能会使用家庭成员等代理人来评估患者与健康相关的生活质量。本研究的目的是帮助癌症研究人员在预期使用代理人报告的数据时，选择一种经过验证的与健康相关的生活质量工具。
对研究成对成年癌症患者和代理人对多维、经过验证的健康相关生活质量工具的反应一致性的研究进行系统评价和方法学评估。我们检索了PubMed、CINAHL、PsycINFO，并查阅了综述论文的参考文献。我们回顾了每种经过验证的工具的一致性评估方法、结果和相关因素。
共纳入32篇报告29个研究人群的论文。大多数论文是横断面研究（N = 20），并使用了疾病特异性工具（N = 19），主要是FACT和EORTC。工具和量表的患者和代理人平均得分平均相似，大多数平均差异<10分，但标准差较大。FACT和EORTC的平均组内相关系数（ICC）范围为0.35至0.62，具体取决于量表。很少有论文（N = 15）评估与一致性相关的因素，结果和测量方法不一致。EORTC是评估最频繁的疾病特异性工具（N = 5篇论文）。对于通用工具，COOP/WONCA最常提供一致性和相关因素信息（N = 3篇论文）。MQOL是评估最频繁的临终工具（N = 3篇论文）。
代理人和患者的得分平均相似，但存在较大的、具有临床重要意义的残余变异性。对于EORTC（疾病特异性工具）、COOP/WONCA（通用工具）和MQOL（临终特异性工具），证据基础最为充分。
