Gabel Matthew, Bollinger Rebecca M, Coble Dean W, Grill Joshua D, Edwards Dorothy F, Lingler Jennifer H, Chin Erin, Stark Susan L
Department of Political Science, Washington University in St. Louis, St. Louis, MO, USA.
Knight Alzheimer Disease Research Center, Washington University in St. Louis, St. Louis, MO, USA.
J Alzheimers Dis. 2022;87(2):945-955. doi: 10.3233/JAD-215710.
Retention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants.
We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research.
Reasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one's own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model.
Factor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR > 0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one's own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants' suggestions emphasized more feedback about individual test results and AD research.
The results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.
留住研究参与者对于推进阿尔茨海默病（AD）研究和开发治疗干预措施至关重要。然而，最近的多年期AD研究已经失去了10%至54%的参与者。
我们对四个阿尔茨海默病研究中心的443名参与者（临床痴呆评定量表[CDR]≤1）进行了随机抽样调查，以阐明持续参与纵向AD研究的感知促进因素和障碍。
通过因素分析来描述参与的原因。使用逻辑回归模型估计个人目标的感知实现和抱怨对出勤率和退出可能性的影响。使用潜在狄利克雷分配主题模型分析提出研究改进建议的开放式回答。
因素分析揭示了个人利益和利他主义这两个类别是持续参与的驱动因素。认知障碍（CDR>0）的参与者更强调个人利益而非社会利益。对医学研究人员信任度较高的参与者更有可能强调更广泛的社会利益。少数人认可任何抱怨。个人目标的更高感知实现和更少的抱怨与更高的出勤率和更低的退出可能性相关。促进因素包括获得医疗中心的支持和/或未来治疗、了解AD和记忆问题以及与工作人员相处愉快。参与者的建议强调了更多关于个人测试结果和AD研究的反馈。
结果证实了先前确定的促进因素和障碍。两个新领域，即关于个人测试结果的更好沟通和关于AD研究的更多反馈，成为提高参与度的主要因素。
