Partnering With Young Adults to Improve Engagement in Longitudinal Studies Across the Transition From Pediatric to Adult Type 1 Diabetes Care

Young adults with type 1 diabetes face challenges transitioning from pediatric to adult health care, often resulting in gaps in or disengagement from care and suboptimal health outcomes. Longitudinal research during this period is critical to improve health outcomes, but is challenging. This study aimed to empirically evaluate technology-driven, stakeholder-informed strategies to improve longitudinal research study retention during the transition from pediatric to adult health care. In phase 1, we partnered with young-adult stakeholders to co-develop potential digital retention strategies. In phase 2, we enrolled 24 young adults with type 1 diabetes at their final pediatric diabetes clinic visit and assigned them to one of three retention strategy cohorts: weekly text messages, a digital study newsletter, or live virtual meetups. We followed participants for 12 months and assessed retention via completion of three study tasks: surveys, A1C kits, and glucose device downloads. All three strategies supported moderately high retention (71% at 12 months), but engagement in the strategies varied. The weekly text message cohort had the highest completion rates across tasks and required the least amount of research staff effort. In contrast, the digital study newsletter and virtual meetup strategies, although highly rated in phase 1, were labor-intensive and resulted in lower engagement. This study demonstrates the value of empirically testing stakeholder-informed digital retention strategies. Low-burden digital approaches such as text messaging may be both effective and scalable. Investing in small, pragmatic studies can improve the feasibility and impact of future longitudinal research in young adults with type 1 diabetes and other populations that are underrepresented in research.