Making outcome measures matter: Why should “what matters to people living with dementia” matter to dementia researchers?

IF 13 1区医学 Q1 CLINICAL NEUROLOGY

Alzheimer's & Dementia Pub Date : 2025-06-22 DOI:10.1002/alz.70359

Siobhan T. Reilly, Andrew J. E. Harding

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引用次数: 0

Abstract

This article provides an overview of evidence to support a call to action for dementia researchers to ensure that “what matters to people living with dementia” should be at the heart of any decision-making around the choices and design of outcome measures. There have been sufficient reviews observing how the outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers. If researchers continue to use existing measures that are not valued by people living with dementia, they will waste limited research resources by using measures that are not sufficiently sensitive to detect changes that might be attributed to interventions. It is time for researchers to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia.

Highlights

Outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers.
Existing outcome measures have been shown not to be fit for purpose and tend to focus on symptom reduction or broad conceptualizations of quality of life.
Dementia researchers will need to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia.

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制定重要的结果衡量标准：为什么“对痴呆症患者重要的事情”对痴呆症研究人员来说很重要？

这篇文章提供了一个证据概述，以支持痴呆症研究人员采取行动的呼吁，以确保“对痴呆症患者重要的事情”应该成为围绕结果测量的选择和设计的任何决策的核心。有足够的评论观察到，在以前的研究中使用的结果测量方法并没有得到痴呆症患者或他们的护理人员的重视。如果研究人员继续使用痴呆症患者不重视的现有措施，他们将浪费有限的研究资源，因为他们使用的措施不够敏感，无法检测可能归因于干预措施的变化。现在是研究人员开展国际合作的时候了，以确保将资源投入到设计和验证用于测量痴呆症患者心理社会结果的新方法上。在以前的研究中使用的结果衡量标准并不是那些被痴呆症患者或他们的照顾者所重视的。现有的结果测量已被证明不适合目的，并倾向于关注症状减轻或生活质量的广义概念。痴呆症研究人员将需要进行国际合作，以确保将资源投入设计和验证用于测量痴呆症患者心理社会结果的新方法。

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 & Dementia 医学-临床神经学

CiteScore

14.50

自引率

5.00%

发文量

299

审稿时长

3 months

期刊介绍： Alzheimer's & Dementia is a peer-reviewed journal that aims to bridge knowledge gaps in dementia research by covering the entire spectrum, from basic science to clinical trials to social and behavioral investigations. It provides a platform for rapid communication of new findings and ideas, optimal translation of research into practical applications, increasing knowledge across diverse disciplines for early detection, diagnosis, and intervention, and identifying promising new research directions. In July 2008, Alzheimer's & Dementia was accepted for indexing by MEDLINE, recognizing its scientific merit and contribution to Alzheimer's research.