原发性进行性失语症中的生活质量评分和代理偏见：故事的两面？
Quality of Life Ratings and Proxy Bias in Primary Progressive Aphasia: Two Sides to the Story?
机构信息
School of Psychological Sciences, Macquarie University, Sydney, AU -NSW, Australia.
School of Psychology, The University of Sydney, Sydney, AU -NSW, Australia.
出版信息
Am J Alzheimers Dis Other Demen. 2023 Jan-Dec;38:15333175231177668. doi: 10.1177/15333175231177668.
A valid measure of quality of life is important for clinical goal setting and for evaluating interventions. In the amnestic dementias, proxy-raters (e.g. friends, families, clinicians) typically rate quality of life than the self-ratings given by the person with dementia - a proxy bias. This study investigated whether the same proxy bias occurs in Primary Progressive Aphasia (PPA), a language-led dementia.Quality of life was measured in 18 individuals with PPA using self-ratings, and proxy-ratings by their main communication partner, using the Quality of Life in Alzheimer's Disease Scale.There was no strong evidence for proxy bias at a group level, with no consistent pattern across dyads, where proxy- and self-ratings did not show good levels of agreement. We suggest that self-ratings and proxy-ratings of quality of life in PPA are not interchangeable. Higher-powered investigation of the patterns observed here is warranted in future studies.
生活质量的有效衡量对于临床目标设定和干预评估非常重要。在遗忘型痴呆中，代理评估者（例如朋友、家人、临床医生）通常比痴呆症患者本人的自我评估更能评价生活质量，这是一种代理偏差。本研究调查了这种代理偏差是否也存在于原发性进行性失语症（PPA），一种以语言为导向的痴呆症中。使用阿尔茨海默病生活质量量表，对 18 名 PPA 患者进行了自我评估和主要沟通伙伴的代理评估。在组水平上没有强烈的代理偏差证据，并且在对子之间也没有一致的模式，其中代理和自我评估没有显示出很好的一致性。我们认为，PPA 患者的自我评估和代理评估的生活质量不能互换。在未来的研究中，需要更有力地调查这里观察到的模式。
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