WA Centre for Health and Ageing, Centre for Medical Research, Perth, Western Australia, Australia.
PLoS One. 2010 Dec 13;5(12):e15621. doi: 10.1371/journal.pone.0015621.
There is no consensus regarding the optimal approach to assessment of the quality of life of people with dementia. We undertook the present study to describe and determine the factors associated with ratings of the quality of life of a cohort of people with dementia living in a residential care facility.
METHODOLOGY/PRINCIPAL FINDINGS: 351 people with dementia living in residential care facilities, and their staff and family informants participated in this cross sectional observational study. Quality of life was measured using self (Quality of Life in Alzheimer's Disease [QoL-AD] scale), and informant (QoL-AD and Alzheimer's Disease Related QoL Scale) reports. 226 people (64%) with dementia (median MMSE 17; 12-21) were able to self rate the QoL-AD scale and these subjects' ratings were compared to ratings by staff and family. Both staff and family informant ratings of the QoL-AD underestimated self ratings (mean difference -7.8, 95% CI -8.8, -6.7 for staff rated QoL-AD; and mean difference -7.2, 95% CI -8.5, -6.0 for family rated QoL-AD). Self ratings of QoL were lower among people who were restrained, had fallen or had pain. Informant ratings of the QoL of the participants with dementia were consistently and significantly lower for people with severe cognitive impairment, who had fallen, had presence of neuropsychiatric symptoms, or where care giver distress was present. Documented restraint, reported pain and neuropsychiatric symptoms were independently associated with lower self rating of the QoL-AD in multivariate models. Cognitive impairment, case conferencing, hospitalizations and neuropsychiatric symptoms were found to be independently associated with staff rated ADRQL.
The majority of people with dementia living in residential care facilities can rate their own QoL. Informant ratings underestimate self ratings of QoL of people with dementia, and appear to be associated with factors which are not associated with self ratings.
目前对于评估痴呆患者生活质量的最佳方法尚未达成共识。本研究旨在描述和确定与居住在养老院的痴呆患者生活质量相关的因素。
方法/主要发现：本横断面观察性研究纳入了 351 名居住在养老院的痴呆患者及其工作人员和家属。使用自我报告（痴呆患者生活质量量表 [QoL-AD]）和家属报告（QoL-AD 和阿尔茨海默病相关生活质量量表）来评估生活质量。226 名（64%）痴呆患者（中位数 MMSE 为 17 分；范围 12-21 分）能够自我评估 QoL-AD 量表，我们将这些患者的评分与工作人员和家属的评分进行了比较。工作人员和家属对 QoL-AD 的评分均低估了自我评分（工作人员评估的 QoL-AD 的平均差异为-7.8，95%CI -8.8，-6.7；家属评估的 QoL-AD 的平均差异为-7.2，95%CI -8.5，-6.0）。自我评估 QoL 较低的患者更可能受到约束、跌倒或疼痛。在认知功能严重受损、跌倒、存在神经精神症状或照顾者有压力的情况下，家属对患者生活质量的评分始终显著较低。在多变量模型中，记录的约束、报告的疼痛和神经精神症状与自我评估的 QoL-AD 评分较低独立相关。认知障碍、病例讨论、住院和神经精神症状与工作人员评估的 ADRQL 独立相关。
大多数居住在养老院的痴呆患者能够自评生活质量。家属的评分低估了痴呆患者的自评生活质量，并且似乎与与自评无关的因素有关。
