PDF(Pubmed)
Abstract：
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
摘要：
背景：研究界历来未能在痴呆症临床试验中招募不同的参与者。痴呆症护理研究的一个独特方面是研究伙伴的要求，谁可以证明护理接受者的临床和功能能力。这项研究的目的是评估种族和族裔差异以及痴呆症护理人员中各种试验考虑因素的重要性，他们决定作为研究伙伴参与临床研究。方法：我们在美国痴呆症护理人员的全国代表性调查中嵌入了一个假设的痴呆症临床试验的小插图，过度抽样非西班牙裔黑人和西班牙裔护理人员。痴呆症护理人员被问及是否愿意与他们的护理接受者一起参加试验，并在假设的参与决定中评估了九项考虑因素的重要性。在基础人口统计学模型中分析了照顾者的人口统计学特征作为试验参与的预测因子。在第二个原因中，模型照顾者的人口统计学特征和九项考虑因素的评级重要性分别被分析为预测因子；两个模型都使用调查加权逻辑回归。结果：样本由610名痴呆症护理人员组成，包括156名非西班牙裔黑人和122名西班牙裔照顾者参与者。在基本人口模型中，假设性试验参与与老年护理者年龄呈负相关(OR(比值比)=0.72,p=<0.001).在原因模型中，通过参与研究帮助他人的社会责任的等级重要性与参与显着相关（OR=1.56，p=0.049），而护理接受者出现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人护理人员之间的假设参与没有显着差异，或在西班牙裔和非西班牙裔白人照顾者之间。结论：西班牙裔和非西班牙裔黑人痴呆照顾者参与假设的痴呆临床试验的可能性并不比非西班牙裔白人痴呆照顾者低。我们的研究表明，在痴呆症临床研究中招募不同人群的失败并不是由于代表性不足群体成员的意愿降低，而是可能反映出结构性障碍和历史上被排除在试验参与之外。
