Reilly Siobhan T, Harding Andrew J E
Centre for Applied Dementia Studies, Faculty of Health Studies, University of Bradford, Bradford, UK.
Centre for Ageing Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK.
Alzheimers Dement. 2025 Jun;21(6):e70359. doi: 10.1002/alz.70359.
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.
本文概述了相关证据，以支持呼吁痴呆症研究人员采取行动，确保“对痴呆症患者重要的事项”应成为围绕结果测量的选择和设计进行任何决策的核心。已有足够多的综述指出，以往研究中使用的结果测量并非痴呆症患者及其护理人员所重视的那些。如果研究人员继续使用痴呆症患者不重视的现有测量方法，他们将因使用对检测可能归因于干预措施的变化不够敏感的测量方法而浪费有限的研究资源。现在是研究人员进行国际合作的时候了，以确保资源用于设计和验证针对痴呆症患者心理社会结果测量的新方法。要点：以往研究中使用的结果测量并非痴呆症患者及其护理人员所重视的那些。现有的结果测量已被证明不适用，且往往侧重于症状减轻或对生活质量的宽泛概念化。痴呆症研究人员需要进行国际合作，以确保资源用于设计和验证针对痴呆症患者心理社会结果测量的新方法。
