Huang Hsiu-Li, Chang Mei Yeh, Tang John Sai-Hung, Chiu Yi-Chen, Weng Li-Chueh
School of Nursing, Chang Gung University, No. 259 Wen-Hwa 1st Road, Kwei-Shen, Taoyuan, Taiwan, R.O.C.
J Clin Nurs. 2009 Nov;18(22):3107-18. doi: 10.1111/j.1365-2702.2008.02537.x. Epub 2008 Dec 12.
To determine factors related to the discrepancy in patient- and proxy-rated quality of life for patients with dementia; whether this discrepancy is associated with characteristics of patients, caregivers or the caregiver-patient relationship; and which characteristics best predict this discrepancy.
To increase the reliability of quality of life measurements for persons with dementia, many researchers have incorporated proxy reports. However, their investigations have indicated that caregiver-rated quality of life is not the same as the patient's own rating. The factors related to this discrepancy have previously been explored, but studies rarely focussed on the quality of the caregiver-patient relationship as a determinant of the discrepancy.
A cross-sectional design was used.
Data were gathered from community-based interviews with 120 dyads of patients with Alzheimer's disease or related dementia and their caregivers in Taipei. A structured questionnaire was used to collect data, and the main variable (quality of life-Alzheimer's disease) was rated separately by patients and caregivers. The data were analysed using intraclass correlation coefficients and multivariate regression methods.
The agreement between patients' and caregivers' quality of life-Alzheimer's disease ratings was low. This discrepancy was significantly associated with disturbing dementia behaviour, caregivers' perceived distress for problem behaviours, caregivers' overall quality of life and quality of the caregiver-patient relationship.
The observed discrepancy between caregiver- and patient-rated quality of life for persons with dementia was largely predicted by the quality of the caregiver-patient relationship.
Medical professionals should cautiously deliberate when using caregiver-reported quality of life to substitute for patient-reported quality of life. When using a proxy report or a combined caregiver-patient rating, medical professionals should assess the quality of the relationship between patient and proxy.
确定与痴呆患者自我评定和代理人评定的生活质量差异相关的因素；这种差异是否与患者、照料者或照料者 - 患者关系的特征有关；以及哪些特征最能预测这种差异。
为提高痴呆患者生活质量测量的可靠性，许多研究人员纳入了代理人报告。然而，他们的调查表明，照料者评定的生活质量与患者自己的评定不同。此前已经探讨了与这种差异相关的因素，但研究很少将照料者 - 患者关系的质量作为差异的决定因素。
采用横断面设计。
通过对台北120对患有阿尔茨海默病或相关痴呆的患者及其照料者进行社区访谈收集数据。使用结构化问卷收集数据，主要变量（阿尔茨海默病生活质量）由患者和照料者分别评定。使用组内相关系数和多元回归方法分析数据。
患者和照料者对阿尔茨海默病生活质量的评定之间的一致性较低。这种差异与令人不安的痴呆行为、照料者对问题行为的感知困扰、照料者的总体生活质量以及照料者 - 患者关系的质量显著相关。
观察到的痴呆患者照料者和患者评定的生活质量之间的差异在很大程度上由照料者 - 患者关系的质量预测。
医疗专业人员在使用照料者报告的生活质量替代患者报告的生活质量时应谨慎考虑。当使用代理人报告或照料者 - 患者综合评定时，医疗专业人员应评估患者与代理人之间关系的质量。
