Novella J L, Jochum C, Jolly D, Morrone I, Ankri J, Bureau F, Blanchard F
Department of Internal Medicine and Gerontology, Hôpital Sébastopol, Reims, France.
Qual Life Res. 2001;10(5):443-52. doi: 10.1023/a:1012522013817.
Agreement between self reports and proxy reports of health-related quality of life (H RQoL) was examined in a sample of 76 patients with mild to moderate Alzheimer's disease and their proxies. Patients and proxies completed an '17-item Duke health profile'. The items were rephrased for the proxy. The proportion of exact agreement between patients and proxies on the 17 items ranged from 26.3 to 52.6%. Results reveal poor to moderate agreement (intraclass correlation coefficients (ICCs) from 0.00 to 0.61 for 10 subscales) between patients' and proxies' reports. Agreement was higher for measures of function that are directly observable (physical health, disability) and relatively poor for more subjective measures. Proxy reliability varied according to the relationship of the proxy to the index subject. Spouses and nurses agreed more closely with index subjects than did children or nurses' aides. Agreement decreased with increasing severity of dementia. Statistically significant differences in mean scores were noted for several dimensions, with proxies tending to rate the patients as having a lower quality of life than the patients themselves. This study indicates the importance of considering the information source of a patient's HRQoL. However, assessments by proxies should be used with caution.
在76例轻度至中度阿尔茨海默病患者及其代理人的样本中，对健康相关生活质量（HRQoL）的自我报告与代理人报告之间的一致性进行了研究。患者和代理人完成了一份“17项杜克健康概况”。这些项目为代理人进行了重新表述。患者和代理人在这17个项目上完全一致的比例在26.3%至52.6%之间。结果显示，患者报告与代理人报告之间的一致性较差至中等（10个分量表的组内相关系数（ICC）从0.00到0.61）。对于直接可观察的功能指标（身体健康、残疾），一致性较高，而对于更主观的指标，一致性相对较差。代理人的可靠性因代理人与被索引对象的关系而异。配偶和护士与被索引对象的一致性比孩子或护士助理更高。随着痴呆症严重程度的增加，一致性降低。在几个维度上注意到平均得分存在统计学上的显著差异，代理人倾向于将患者的生活质量评价为低于患者自身。这项研究表明了考虑患者HRQoL信息来源的重要性。然而，代理人的评估应谨慎使用。
