痴呆症护理研究和心理社会因素
Carla Romano1, Emily Bratlee-Whitaker1, Ann Hartry2
1RTI Health Solutions, Research Triangle Park, NC, USA.
Alzheimer's & dementia : the journal of the Alzheimer's Association
|December 25, 2025
概括
阿尔茨海默病患者及其护理伙伴的优先事项随着疾病的严重程度而演变. 了解这些不断变化的需求是开发AD临床试验以患者为中心的结果的关键.
科学领域:
- 神经科学是一个神经科学.
- 老年学是一门学科.
- 公共卫生 公共卫生
背景情况:
- 优先考虑阿尔茨海默病患者 (PLWAD) 和护理伙伴的需求,对于评估有意义的治疗效益至关重要.
- 之前的研究已经确定了在阿尔茨海默病 (AD) 谱中重要的关键概念.
- 在多样化的人口中评估概念优先事项将增强对阿尔茨海默病生活经验的理解,并指导以患者为中心的终点.
研究的目的:
- 评估和对生活在阿尔茨海默病或患有阿尔茨海默病风险的人及其护理伙伴的优先事项进行背景化.
- 了解在各种AD群体和疾病严重程度之间,概念优先级如何不同.
- 在阿尔茨海默病研究中,为开发以患者为中心的研究终点提供信息.
主要方法:
- 一项正在进行的,横截面的,基于调查的研究,包括大约600名患有或有患AD风险的成年人和护理伙伴.
- 使用最佳-最差缩放 (BWS) 排序概念优先级的基于网络的定量调查的临时分析.
- 分析领域内的优先事项 (例如,沟通,日常活动,情绪) 整体和AD组.
主要成果:
- 总体而言,最优先考虑的概念包括保持思维轨道,正确服用药物,感觉有目的,保持安全,与家人交往和理解对话.
- 在AD群体中,概念优先级各不相同,在中度/重度AD群体中",独立生活能力"的优先级下降",与家人交往"的重要性增加.
- 来自415名受访者的临时调查结果表明,人口结构和AD组代表性各不相同.
结论:
- 混合方法研究证实了"最重要的是什么" (WMM) 概念在AD连续性的重要性.
- 最好的最坏的缩放 (BWS) 显示,域内优先级随疾病严重程度的变化而变化.
- 未来的分析将探索人口统计学/临床分组差异,并将研究结果与临床结果评估 (COA) 和定性数据相结合.
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