Determinants of the discrepancy in patient- and caregiver-rated quality of life for persons with dementia
Determinants of the discrepancy in patient- and caregiver-rated quality of life for persons with dementia
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DOI：
10.1111/j.1365-2702.2008.02537.x
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发表时间：
2009-11-01
影响因子：
4.2
通讯作者：
Weng, Li-Chueh
中科院分区：
文献类型：
--
作者：
Huang, Hsiu-Li;Chang, Mei Yeh;Weng, Li-Chueh
目标。确定痴呆患者患者生活质量与代理人生活质量差异的相关因素；这种差异是否与患者、护理者的特征或护理者与患者的关系有关；以及哪些特征最能预测这种差异。为了提高痴呆症患者生活质量测量的可靠性，许多研究人员纳入了代理报告。然而，他们的调查表明，护理人员对生活质量的评价与病人自己的评价是不一样的。与这种差异相关的因素以前已经被探索过，但是研究很少把护理者与病人关系的质量作为差异的决定因素。采用横断面设计。数据收集自台北120对阿尔茨海默病或相关痴呆患者及其照顾者的社区访谈。采用结构化问卷收集数据，主要变量（阿尔茨海默病生活质量）分别由患者和护理人员评定。采用类内相关系数和多元回归方法对数据进行分析。患者和护理人员对阿尔茨海默病的生活质量评分的一致性很低。这种差异与令人不安的痴呆行为、照顾者对问题行为的感知痛苦、照顾者的整体生活质量和照顾者与病人关系的质量显著相关。观察到的照顾者和患者对痴呆症患者生活质量评价的差异很大程度上是由照顾者-患者关系的质量预测的。与临床实践相关。当使用护理人员报告的生活质量来代替患者报告的生活质量时，医疗专业人员应谨慎考虑。当使用代理报告或综合护理人员-患者评分时，医疗专业人员应评估患者与代理之间关系的质量。
Aims. 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.Background. 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.Design. A cross-sectional design was used.Methods. 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.Results. 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.Conclusions. 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.Relevance to clinical practice. 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.