Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, Toronto, Ontario, Canada.
J Pain Symptom Manage. 2011 Sep;42(3):354-65. doi: 10.1016/j.jpainsymman.2010.11.018. Epub 2011 Mar 31.
Proxy ratings, if valid, may provide an alternative approach to evaluating patient quality of life (QoL) at the end of life.
To examine agreement between terminally ill cancer patients' self-reported QoL and proxy assessment of patient QoL by their family caregiver (FCG) and palliative care physicians (PCPs) at two time points.
Patients admitted to an acute palliative care unit and their FCGs and PCPs completed the McGill Quality of Life Questionnaire (MQOL) at Days 3 and 6 after admission. Response bias and response precision were examined at the individual and group levels. Furthermore, we examined patient factors affecting agreement and responsiveness of proxy MQOL scores to changes in patients' QoL between Days 3 and 6.
Statistically and clinically significant mean differences were detected between the patient and both proxy groups' reports of QoL on Day 3, with the magnitude of the differences decreasing somewhat by Day 6. Proxies underestimated patients' QoL compared with patients' self-report. Response precision based on intraclass correlation values and proportion of approximate agreement was poor to fair at both time points. Agreement was better for patients with greater physical burden and more cognitive difficulties. Proxies' responsiveness to change from Day 3 to Day 6 was low, and proxies were not able to detect minimally important changes in QoL.
The findings suggest that moderate agreement between patient and proxy ratings of QoL develops over time but that precision at the individual level, which is more clinically relevant, is less reliable. New strategies for improving proxy reliability are needed.
代理评分如果有效，可能为评估终末期患者的生活质量（QoL）提供一种替代方法。
研究终末期癌症患者自我报告的 QoL 与他们的家庭护理者（FCG）和姑息治疗医生（PCP）代理评估之间的一致性，以及在两个时间点的一致性。
患者入院后 3 天和 6 天，纳入急性姑息治疗病房的患者及其 FCG 和 PCP 完成麦吉尔生活质量问卷（MQOL）。在个体和群体水平上检查反应偏差和反应精度。此外，我们还研究了影响代理 MQOL 评分与患者 3 天至 6 天之间 QoL 变化之间一致性和反应性的患者因素。
在第 3 天，患者和两个代理组报告的 QoL 存在统计学和临床意义上的显著差异，并且到第 6 天，差异的幅度有所减小。与患者的自我报告相比，代理者低估了患者的 QoL。基于组内相关系数值和近似一致比例的反应精度在两个时间点都较差到中等。对于身体负担较大和认知困难较多的患者，一致性更好。从第 3 天到第 6 天，代理的反应性较低，并且代理无法检测到 QoL 的微小重要变化。
研究结果表明，患者和代理对 QoL 的评分之间的中度一致性随着时间的推移而发展，但个体水平的精度，更具临床相关性，不太可靠。需要新的策略来提高代理的可靠性。
