Lu Thuy V, Campos Paola, Leader Sean, Lee Xavier, Xu Helena, Doran Eric, Grill Joshua D, Lott Ira T
Department of Statistics University of California, Irvine Irvine California USA.
Institute for Memory Impairments and Neurological Disorders University of California, Irvine Irvine California USA.
Alzheimers Dement (N Y). 2024 Jul 31;10(3):e12478. doi: 10.1002/trc2.12478. eCollection 2024 Jul-Sep.
Recruitment challenges in people with and without Down syndrome (DS) can delay research progress and risk sample bias. This study identified and quantified differences in research attitudes across populations of research enrollment decision-makers for individuals with and without DS.
We performed analyses using data from two registries: the University of California, Irvine Consent-to-Contact (C2C) Registry and DS-Connect. The former represented a sample of non-DS decision-makers ( = 4818), while for the latter, we excluded individuals with DS, leaving a population of DS family decision-makers ( = 976). We assessed scores on the Research Attitudes Questionnaire (RAQ) between DS and non-DS decision-makers. We compared total RAQ scores using linear regression and assessed item-level RAQ differences using proportional odds regression.
Mean total RAQ scores were not statistically different between decision-makers in the two registries, after adjusting for age, sex, race and ethnicity, education, and the coronavirus disease 2019 (COVID-19) time frame (Est. Diff = 0.11, 95% confidence interval [CI]: -0.22, 0.43; = 0.531). However, in a pre-specified analysis, we did find evidence of differential attitudes on item-level RAQ scores. Specifically, decision-makers for participants with DS had increased odds of a more favorable response to the question of responsibility to help others (DS vs. non-DS: odds ratio [OR] = 1.26, 95% CI: 1.08, 1.48) and decreased odds of a more favorable response to the question regarding the belief that medical research would find cures for major diseases during their lifetime (DS vs. non-DS: OR = 0.77, 95% CI: 0.66, 0.90).
Our findings provide insights for researchers to develop strategies for recruiting individuals with and without DS into clinical research. The observed item-level differences warrant further investigation to instruct precise recruitment strategies.
Research attitudes between decision-makers for individuals with Down syndrome (DS) and decision-makers without DS were observed to be similar on average.Item-level differences in research attitudes were observed to differ for DS and non-DS decision-makers.These results can help facilitate precise recruitment strategies for populations with DS.
唐氏综合征（DS）患者和非DS患者在研究招募方面面临的挑战可能会延迟研究进展，并存在样本偏差的风险。本研究确定并量化了针对有和没有DS的个体的研究招募决策者群体之间研究态度的差异。
我们使用来自两个登记处的数据进行分析：加利福尼亚大学欧文分校的同意接触（C2C）登记处和DS-Connect。前者代表非DS决策者的样本（n = 4818），而对于后者，我们排除了DS患者，留下了DS家庭决策者群体（n = 976）。我们评估了DS和非DS决策者在研究态度问卷（RAQ）上的得分。我们使用线性回归比较RAQ总分，并使用比例优势回归评估RAQ项目层面的差异。
在调整年龄、性别、种族和族裔、教育程度以及2019年冠状病毒病（COVID-19）时间范围后，两个登记处的决策者之间的平均RAQ总分没有统计学差异（估计差异 = 0.11，95%置信区间[CI]：-0.22，0.43；P = 0.531）。然而，在一项预先指定的分析中，我们确实发现了项目层面RAQ得分存在不同态度的证据。具体而言，DS参与者的决策者对帮助他人的责任问题给出更积极回应的几率增加（DS与非DS：优势比[OR] = 1.26，95%CI：1.08，1.48），而对关于相信医学研究能在其有生之年找到重大疾病治愈方法的问题给出更积极回应的几率降低（DS与非DS：OR = 0.77，95%CI：0.66，0.90）。
我们的研究结果为研究人员制定将有和没有DS的个体纳入临床研究的策略提供了见解。观察到的项目层面的差异值得进一步研究，以指导精确的招募策略。
观察到唐氏综合征（DS）患者的决策者和非DS患者的决策者之间的研究态度平均相似。观察到DS和非DS决策者在研究态度的项目层面存在差异。这些结果有助于为DS人群制定精确的招募策略。
