Type 1 diabetes (T1D) treatment adherence is complex and involves glucose monitoring, counting carbohydrates, and intensive insulin delivery via injections or insulin pump in response to food intake, exercise, and illness to achieve near-normal blood glucose levels. T1D treatment adherence is challenging, especially during adolescence, which can lead to suboptimal blood glucose levels that severely compromises health, and in some cases, leads to premature death. Several interventions for adolescents with T1D exist, but none have focused on adherence barriers. The Barriers to Diabetes Adherence scale assesses these important targets for tailored adherence interventions, including stress/burnout and time pressure/planning. These adherence barriers are significantly associated with non-adherence, higher glycemic levels, and lower quality of life; however, no interventions address these two barriers in research or clinical practice. The overall objective of this study is to use patient-report of adherence barriers to identify intervention targets that will guide the integration of a novel tailored intervention into clinical care to improve adherence, glycemic levels, and quality of life. There are four aims of our multi-site R01. First, we plan to reliably integrate patient-reported questionnaires, including the Barriers to Diabetes Adherence scale and PedsQL-Diabetes Module, into routine care in two, large T1D centers. Second, our existing intervention, Epilepsy Journey will be modified to Diabetes Journey. This intervention includes mobile health modules addressing stress and executive functioning (i.e., the skills needed to start and complete tasks, remember things, and be organized) with accompanying telemedicine sessions with a therapist. We will use expert feedback to modify the modules and then conduct usability testing with 10 adolescents with T1D to ensure the modules are easy to navigate, engaging, and relevant to teens with T1D. Third, we will conduct a pilot clinical trial of Diabetes Journey. Our goal is to evaluate how well Diabetes Journey helps to improve stress/burnout and time pressure/planning (e.g., executive dysfunction) in 256 adolescents with T1D and whether adolescents think Diabetes Journey is helpful and acceptable. Adolescents who experience elevated adherence barriers during routine T1D clinic visits will be randomized to: 1) Diabetes Journey or 2) enhanced standard of care (i.e., handouts and 4 phone calls from a certified diabetes educator). Both interventions will be tailored to each adolescent's reported barrier(s). We will also examine the impact of Diabetes Journey on adherence, glycemic control, and quality of life. Finally, we will examine how family conflict, depressive symptoms, executive functioning, and distress affect adherence barriers and behaviors for future studies. If our study is successful, we will expand Diabetes Journey to include additional adherence barriers and modify to other age groups, leading to larger multi-site T1D clinical studies.
The overall goal of this project is to address the critical need to improve type 1 diabetes (T1D) adherence in adolescents with T1D. We propose to use patient-reported barriers to T1D adherence assessed during T1D clinic appointments to tailor an intervention using mobile and video conferencing technology to improve adherence barriers, and ultimately, health outcomes. This study is relevant to public health because decades of advancements in T1D care have not improved glycemic control and if the aims of this project are achieved, this study will significantly reduce T1D adherence barriers and improve T1D health and quality of life.
