■招募和保留对阿尔茨海默病(AD)研究构成了重大挑战。已提出将AD生物标志物结果返回给参与者作为改善招募和保留的手段。我们提出了与参与者满意度相关的发现,实用程序,和对研究态度的影响从淀粉样蛋白正电子发射断层扫描(PET)披露子研究在威斯康星州注册阿兹海默症预防(WRAP)。
■99名认知未受损的WRAP参与者学习了他们的淀粉样蛋白PET结果(平均年龄±SD=72.0±4.8)。衡量想要学习结果的原因,学习理解,结果效用,参观满意度,研究态度,收集未来研究的入学意愿。组间,进行卡方分析以确定结果类型的差异(升高与淀粉样蛋白PET结果没有升高)在研究理解中,结果效用,参观满意。线性混合效应模型用于评估研究态度和入学意愿随时间的变化,淀粉样蛋白结果类型(升高/未升高),和他们的互动。
■想要学习淀粉样蛋白PET结果的最常见原因是“希望为阿尔茨海默病痴呆症的研究做出贡献”和“告知预防措施[一个]可能采取的措施(例如,改变饮食,锻炼,或其他生活方式的改变)。“总的来说,参与者报告了解结果并发现学习结果有用.对考察访问的满意度非常高,超过80%的人同意访问的有用性和满意度。在学习结果升高和未升高的参与者之间几乎没有差异。在研究过程中,与未获得升高结果的参与者相比,获得升高的淀粉样蛋白PET结果的参与者报告更愿意参加药物试验(β:0.12,p=0.01)和生活方式干预(β:0.10,p=0.02).
■正式纳入披露实践可能会鼓励AD研究中的参与者招募和保留。
■参与者希望了解他们的淀粉样蛋白结果,为研究做出贡献。总体上对披露和披露后访问的满意度很高。返回AD生物标志物可以增加参与研究的意愿。
UNASSIGNED: Recruitment and retention pose a significant challenge to Alzheimer\'s disease (AD) research. Returning AD biomarker results to participants has been proposed as a means to improve
recruitment and retention. We present findings related to participant satisfaction, utility, and impact on research attitudes from the amyloid positron emission tomography (PET) disclosure sub-study within the Wisconsin Registry for Alzheimer\'s Prevention (WRAP).
UNASSIGNED: Ninety-nine cognitively unimpaired WRAP participants learned their amyloid PET results (mean age ± SD = 72.0 ± 4.8). Measures of reasons for wanting to learn results, study comprehension, result utility, visit satisfaction, research attitudes, and future study enrollment willingness were collected. Between-group, chi-squared analysis was conducted to determine differences by result type (elevated vs. not elevated amyloid PET result) in study comprehension, result utility, and visit satisfaction. Linear mixed-effects modeling was used to evaluate changes in research attitudes and enrollment willingness as a function of time, amyloid result type (elevated/not elevated), and their interaction.
UNASSIGNED: The reasons most frequently endorsed for wanting to learn amyloid PET result was a \"desire to contribute to research on Alzheimer\'s disease dementia\" and \"to inform preventative measures [one] might take (e.g., change diet, exercise, or other lifestyle changes).\" Overall, participants reported understanding the results and found learning them useful. Satisfaction with the study visits was overwhelmingly high, with over 80% agreeing with visit usefulness and their satisfaction. Few differences were found between participants who learned an elevated and not elevated result. Over the course of the study, participants who learned an elevated amyloid PET result reported higher willingness to enroll in drug trials (beta: 0.12, p = 0.01) and lifestyle interventions (beta: 0.10, p = 0.02) compared to participants who learned a not elevated result.
UNASSIGNED: Formal incorporation of disclosure practices may encourage participant
recruitment and retention within AD research.
UNASSIGNED: Participants wanted to learn their amyloid results to contribute to research.Satisfaction with disclosure and post-disclosure visits was high overall.Returning AD biomarkers can increase willingness to participate in research.