Discrepancies between self- and proxy-rated quality of life in people living with dementia

IF 4.9 Q1 CLINICAL NEUROLOGY Alzheimer''s and Dementia: Translational Research and Clinical Interventions Pub Date : 2024-06-19 DOI:10.1002/trc2.12486

Maresa Buchholz, Lidia Engel, Fabian Kleinke, Franka Mühlichen, Michelle Pfaff, Moritz Platen, Anika Rädke, Annelie Scharf, Niklas Weber, Neeltje van den Berg, Wolfgang Hoffmann, Bernhard Michalowsky

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Abstract

INTRODUCTION

The aim of this study was to analyze discrepancies between self- and proxy-rated health-related quality of life (HRQoL), measured with the EuroQol 5 Dimension 5 Level survey (EQ-5D-5L), in people living with dementia (PlwD) and their caregivers on an individual response level.

METHODS

EQ-5D-5L, sociodemographic and clinical data were obtained from baseline data of n = 174 dyads of a cluster-randomized, controlled intervention trial. Self- and proxy-rated EQ-5D-5L health profiles were evaluated in terms of response distribution and agreement (weighted Kappa), and discrepancies in individual dimension level were analyzed using the Paretian Classification of Health Change (PCHC) as well as the presence and degree of inconsistencies between ratings.

RESULTS

PlwD had a mean age of 80.1, nearly the half were female and 82.3% were mildly to moderately cognitively impaired. PlwD reported a higher utility index than caregiver proxies (mean 0.75 vs. 0.68, 83% of PlwD > 0.5). According to the PCHC and inconsistency approach, 95% of PlwD rated their health differently compared to proxies; 66% with divergent responses in at least three EQ-5D-5L dimensions. Nine dyads (5%) showed identical ratings. Discrepancies of one higher or lower EQ-5D-5L response represented the most frequent discrepancy (35.4%). Caregivers were two times more likely to report “moderate problems,” representing the middle of the 5-point Likert scale. Usual activities had the lowest agreement between ratings (weighted kappa = 0.23). In PlwD reporting no or some problems in EQ-5D-5L-dimensions, proxies were more likely to report more problems and vice versa, especially in the more observable dimension usual activities and less likely in the less observable domains pain/discomfort and anxiety/depression.

DISCUSSION

The central tendency bias observed in proxy-ratings could be associated with assessment uncertainties, resulting in an underestimation (overestimation) in PlwD reporting better (worse) health. This diverging trend extends the knowledge from previous studies and underlines the need for more methodological research in this area.

Highlights

People living with dementia (PlwD) rate their health differently than proxies.
Proxy-ratings over- or underestimate PlwD health when self-ratings are low or high.
Proxies indicate a possible central tendency bias.
Further research is needed to understand influencing factors.

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痴呆症患者自评和代评生活质量之间的差异。

简介本研究旨在分析痴呆症患者（PlwD）及其照顾者在个人反应层面上自我评定和代理评定的健康相关生活质量（HRQoL）之间的差异：方法：EQ-5D-5L、社会人口学和临床数据均来自群组随机对照干预试验中 n = 174 个二元组的基线数据。根据反应分布和一致性（加权卡帕）对自评和代理评定的 EQ-5D-5L 健康状况进行了评估，并使用健康变化的帕雷特分类法（PCHC）分析了个体维度水平的差异以及评分之间是否存在不一致和不一致的程度：PlwD的平均年龄为80.1岁，近一半为女性，82.3%为轻度至中度认知障碍。患者报告的效用指数高于护理代理（平均 0.75 对 0.68，83% 的患者效用指数大于 0.5）。根据 PCHC 和不一致性方法，95% 的 PlwD 对其健康状况的评价与代理人不同；66% 的 PlwD 在至少三个 EQ-5D-5L 维度上的回答存在差异。有 9 组（5%）表现出相同的评分。最常见的差异是 EQ-5D-5L 回答高或低一个维度（35.4%）。护理人员报告 "中等问题 "的几率是 "中等问题 "的两倍，"中等问题 "代表 5 点李克特量表的中间值。通常活动的评分之间的一致性最低（加权卡帕 = 0.23）。在报告 EQ-5D-5L 维度中没有问题或有一些问题的 PlwD 中，代理人更有可能报告更多问题，反之亦然，尤其是在可观察性较强的维度 "惯常活动 "中，而在可观察性较弱的领域 "疼痛/不适 "和 "焦虑/抑郁 "中，代理人报告更多问题的可能性较小：在代理评分中观察到的中心倾向偏差可能与评估的不确定性有关，从而导致低估（高估）了报告健康状况较好（较差）的瘫痪病人。这种差异趋势扩展了以往研究的知识，并强调了在这一领域开展更多方法学研究的必要性：重点：痴呆症患者（PlwD）对自己健康状况的评价与代理人不同。当自我评价较低或较高时，代理人的评价会高估或低估PlwD的健康状况。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Medicine-Psychiatry and Mental Health

CiteScore

10.10

自引率

2.10%

发文量

134

审稿时长

10 weeks

期刊介绍： Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.