Zhu Carolyn W, Sano Mary
Brookdale Department of Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai New York New York USA.
James J. Peters VA Medical Center Bronx New York USA.
Alzheimers Dement (N Y). 2024 Jul 31;10(3):e12455. doi: 10.1002/trc2.12455. eCollection 2024 Jul-Sep.
Are reductions in the rate of decline from the new disease-modifying treatments (DMTs) in early Alzheimer's disease (AD) meaningful? We examined whether such reductions may be reflected in changes in health-related resource use.
Patients with Clinical Dementia Rating (CDR) = 0.5 or 1 with a clinical diagnosis of mild cognitive impairment or AD, reflecting clinical trial populations. Health-related resource use was reported using the Resource Use Inventory (RUI) including direct medical care, non-medical care, unpaid informal care, and time use.
Faster decline in CDR-Sum of Boxes (CDR-SB) from baseline was independently associated with higher likelihood and hours of informal care received, and lower likelihood of employment/volunteer work, but not with direct medical care.
Reductions in the rate of decline in CDR-SB seen from DMTs significantly affect patients' work capacity and need for informal care, indicators of economic impact meaningful to patients, families, and health systems. These measures are not readily captured in administrative data sets.
Following a cohort of participants with MCI or mild dementia due to AD that mimics participants targeted for AD trials, this study showed slower decline in CDR-SB have significant effects on patients' work capacity and need for informal care, but not on their direct medical care utilization such as hospitalizations, ED use, and doctors' visits.Capturing potential benefits in health-related resource use may require direct measures of informal care and work/volunteer effort which are meaningful outcomes to patients, families and health systems.Caution is needed in our effort to assess benefits of recently developed disease modifying treatment in AD using electronic health records and administrative data from which utilization of direct medical care are routinely collected as these data sources may not capture the most apparent changes in resource utilization during early disease stages.
早期阿尔茨海默病（AD）中新型疾病修饰疗法（DMTs）使疾病衰退速率降低是否具有意义？我们研究了这种降低是否可能反映在与健康相关的资源使用变化中。
临床痴呆评定量表（CDR）=0.5或1且临床诊断为轻度认知障碍或AD的患者，反映临床试验人群。使用资源使用清单（RUI）报告与健康相关的资源使用情况，包括直接医疗护理、非医疗护理、无薪非正式护理和时间使用情况。
从基线开始，CDR-盒总和（CDR-SB）下降更快与接受非正式护理的可能性和时长增加以及就业/志愿工作的可能性降低独立相关，但与直接医疗护理无关。
DMTs使CDR-SB衰退速率降低显著影响患者的工作能力和对非正式护理的需求，这些对患者、家庭和卫生系统具有经济影响意义的指标。这些措施在行政数据集中不易获取。
在一组因AD导致的轻度认知障碍或轻度痴呆的参与者中，该研究表明CDR-SB衰退减缓对患者的工作能力和非正式护理需求有显著影响，但对其直接医疗护理利用（如住院、急诊使用和就诊）没有影响。在与健康相关的资源使用中获取潜在益处可能需要直接衡量非正式护理以及工作/志愿努力，这些对患者、家庭和卫生系统来说是有意义的结果。在我们试图利用电子健康记录和常规收集直接医疗护理利用情况的行政数据来评估AD中最近开发的疾病修饰疗法的益处时需要谨慎行事，因为这些数据源可能无法捕捉疾病早期阶段资源利用最明显的变化。
