WA Centre for Health and Ageing, Centre for Medical Research, University of Western Australia, Perth, Australia.
Int Psychogeriatr. 2012 May;24(5):708-21. doi: 10.1017/S1041610211002493. Epub 2012 Jan 16.
Quality of life (QoL) in dementia is a complex construct and factors that predict QoL ratings are unclear. We designed this study to determine: (1) the agreement in QoL ratings between community-dwelling patients with mild to moderate dementia and family carers; and (2) the factors associated with self-reported and two types of carer-reported QoL ratings: carer-carer perspective and carer-patient perspective.
A cross-sectional study was carried out of 80 community-dwelling patients with the diagnosis of probable Alzheimer's disease (AD) of mild or moderate severity according to NINCDS-ADRD criteria, and their 80 family carers. The QoL-AD was the primary outcome measure. We collected patients' self-reported QoL ratings and two types of carer-reported QoL ratings: carer-patient and carer-carer perspectives. Explanatory variables included demographics, lifestyle, and clinical information from patients and carers, along with cognition, awareness, psychopathology, burden-of-care, and functionality in daily life. Bland-Altman plots guided the interpretation of agreement by visualizing the distribution of all the ratings. Univariate and multivariate regression analyses were conducted to examine the contribution of candidate explanatory factors.
Patients and their carers showed good agreement in their QoL ratings, although the total scores of carers (regardless of perspective) were lower than the scores of patients. Depression, insight and use of anti-dementia agents were associated with QoL self-ratings, whereas cognitive function was directly associated and depression inversely associated with carers' QoL ratings.
Mild to moderate community-dwelling AD patients and their carers (with different perspectives) agree within an acceptable range in QoL ratings but the ratings are driven by different factors, and consequently are not interchangeable but complementary. They provide valuable information when used separately, not in a composite score.
痴呆患者的生活质量（QoL）是一个复杂的概念，预测 QoL 评分的因素尚不清楚。我们设计了这项研究来确定：（1）轻度至中度痴呆的社区居住患者及其家庭照顾者之间 QoL 评分的一致性；（2）与自我报告和两种类型的照顾者报告的 QoL 评分相关的因素：照顾者-照顾者视角和照顾者-患者视角。
对 80 名根据 NINCDS-ADRD 标准诊断为轻度或中度阿尔茨海默病（AD）的社区居住患者及其 80 名家庭照顾者进行了横断面研究。主要结局测量指标为 QoL-AD。我们收集了患者的自我报告的 QoL 评分以及两种类型的照顾者报告的 QoL 评分：照顾者-患者视角和照顾者-照顾者视角。解释变量包括患者和照顾者的人口统计学、生活方式和临床信息，以及认知、意识、精神病理学、负担和日常生活功能。Bland-Altman 图通过可视化所有评分的分布来指导一致性的解释。进行单变量和多变量回归分析，以检查候选解释因素的贡献。
患者及其照顾者在 QoL 评分方面表现出良好的一致性，尽管照顾者的总分（无论视角如何）均低于患者的评分。抑郁、洞察力和使用抗痴呆药物与 QoL 自我评分相关，而认知功能与照顾者的 QoL 评分直接相关，抑郁则与之相反。
轻度至中度社区居住的 AD 患者及其照顾者（具有不同的视角）在 QoL 评分方面具有可接受的一致性，但评分受不同因素驱动，因此不能互换但可以互补。当单独使用时，它们提供了有价值的信息，而不是综合评分。
