Department of Neurology, University of California San Francisco, San Francisco, CA, USA.
Department of Psychology, University of California Berkeley, Berkeley, CA, USA.
Alzheimers Res Ther. 2024 Oct 15;16(1):224. doi: 10.1186/s13195-024-01579-5.
The research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient's clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners.
We embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression.
The sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p = < 0.001). In the reasons model, the rated importance of a social responsibility to help others by participating in research was significantly associated with participation (OR = 1.56, p = 0.049), while the importance of the possibility of the care recipient experiencing serious side effects was negatively associated with participation (OR = 0.51, p = 0.003). In both models there was no significant difference in hypothetical participation between non-Hispanic Black and non-Hispanic White caregivers, or between Hispanic and non-Hispanic White caregivers.
Hispanic and non-Hispanic Black dementia caregivers were not less likely than non-Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups but may instead reflect structural barriers and historic exclusion from trial participation.
研究界在过去未能招募到不同种族和族裔的参与者参与痴呆症临床试验。痴呆症护理研究的一个独特方面是需要一名研究伙伴，他可以证明护理接受者的临床和功能能力。本研究旨在评估痴呆症护理者在决定作为研究伙伴参与临床研究时，不同种族和族裔之间的差异以及各种试验考虑因素的重要性。
我们在一项针对美国痴呆症护理者的全国代表性调查中嵌入了一个关于假设性痴呆症临床试验的案例，对非西班牙裔黑人和西班牙裔护理者进行了抽样。痴呆症护理者被问及他们是否愿意让自己的护理对象参与试验，并对参与假设性决策的九个考虑因素的重要性进行评分。使用调查加权逻辑回归分析了护理者的人口统计学特征，以预测他们在基础人口统计学模型中的试验参与情况。在第二个原因模型中，护理者的人口统计学特征和九个考虑因素的评分重要性分别作为预测因素进行分析；两个模型都使用了调查加权逻辑回归。
样本包括 610 名痴呆症护理者，其中 156 名非西班牙裔黑人和 122 名西班牙裔护理者。在基础人口统计学模型中，假设性试验参与与较年长的护理者年龄呈负相关（OR=0.72，p<0.001）。在原因模型中，参与研究以履行社会责任帮助他人的重要性与参与显著相关（OR=1.56，p=0.049），而护理对象经历严重副作用的可能性的重要性与参与呈负相关（OR=0.51，p=0.003）。在两个模型中，非西班牙裔黑人和非西班牙裔白种人护理者之间，以及西班牙裔和非西班牙裔白种人护理者之间，假设性参与率没有显著差异。
西班牙裔和非西班牙裔黑种人痴呆症护理者参与假设性痴呆症临床试验的可能性并不低于非西班牙裔白人痴呆症护理者。我们的研究表明，在痴呆症临床研究中未能招募到不同人群并不是因为代表性不足群体的成员参与意愿较低，而是可能反映了结构性障碍和历史上被排除在试验参与之外。
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