Understanding the Child Experience in the Autoimmunity Screening for Kids (ASK) Study

Screening for pre-symptomatic type 1 diabetes (T1D) by measuring islet autoantibodies (IA) has historically targeted first-degree relatives of individuals with T1D, but is now rapidly increasing in the general population. Children diagnosed through these studies may experience both immediate and long-term health benefits including lower A1C and impressively low rates of DKA at diagnosis. As screening for IA in the general population expands, there is a critical need to understand factors associated with active participation in screening and monitoring programs as continued engagement with the monitoring protocol is essential for preventing adverse outcomes and offering novel drug interventions to eligible individuals with presymptomatic T1D. Several studies have documented the psychological experience of caregivers whose children are participating in screening and monitoring programs. However, there is an extreme paucity of literature examining the psychological experience of the children themselves. This project will (1) identify caregiver and child demographic, clinical and psychological characteristics associated with optimal participant engagement in IA screening programs and (2) document the experience of children ≥ 10 years of age with confirmed IA+ test results who agree to be monitored. Results will inform future behavioral interventions to increase retention in IA screening and monitoring programs.