Mohini P, Palaganas M, Elia Y, Motran L, Sochett E, Curtis J, Scholey J W, McArthur L, Mahmud F H
Division of Endocrinology, Department of Pediatrics, The Hospital for Sick Children, Toronto, Canada.
Division of Nephrology, Department of Medicine, University Health Network, Toronto, Canada.
J Patient Exp. 2022 Nov 13;9:23743735221138236. doi: 10.1177/23743735221138236. eCollection 2022.
Understanding motivational drivers and barriers to patient participation in diabetes research are important to ensure research is relevant and valuable. Young adults with type 1 diabetes (T1D) completed a 31-question qualitative survey evaluating participant experience, understanding, and motivators and barriers to research involvement. A total of 35 participants, 19-28 years of age, 60% female, completed the survey. Motivating factors included personal benefit, relationship with the study team, curiosity, financial compensation, altruism, and nostalgia. Older participants (>22 years) reported higher levels of trust in the study team (p = 0.02) and their relationship with the study team positively influenced their decision to participate (p = 0.03). Financial compensation was a strong motivator for participants with higher education (p = 0.02). Age, sex, education level, and trust in the study team influenced participants' understanding. Barriers included logistics and lack of familial support. Important motivational drivers and barriers to participation in research by young adults with T1D must be considered to increase research engagement and facilitate the discovery of new knowledge.
了解患者参与糖尿病研究的动机驱动因素和障碍对于确保研究具有相关性和价值至关重要。1型糖尿病（T1D）的年轻成年人完成了一项包含31个问题的定性调查，评估参与者的经历、理解以及参与研究的动机和障碍。共有35名年龄在19至28岁之间、60%为女性的参与者完成了该调查。激励因素包括个人利益、与研究团队的关系、好奇心、经济补偿、利他主义和怀旧情绪。年龄较大的参与者（>22岁）报告称对研究团队的信任程度更高（p = 0.02），并且他们与研究团队的关系对其参与决定产生了积极影响（p = 0.03）。经济补偿对受过高等教育的参与者是一个强大的激励因素（p = 0.02）。年龄、性别、教育水平以及对研究团队的信任影响了参与者的理解。障碍包括后勤问题和缺乏家庭支持。必须考虑1型糖尿病年轻成年人参与研究的重要动机驱动因素和障碍，以提高研究参与度并促进新知识的发现。
