Kids CoLab - Supporting collaborative decision making with youth impacted by chronic kidney disease

PROJECT SUMMARY/ABSTRACT Despite clinical advances which have resulted in 90% of pediatric patients with late-stage chronic kidney disease (CKD) surviving to adulthood, the transition to adult care is marked by significant instability and risk of morbidity, mortality, and shortened lifespans. Underdeveloped self-management and limited decision-making skills, the result of both biological and system-based barriers, lead to undesirable outcomes such as acute kidney injury, expedited CKD progression, and allograft loss following transition. The goal of an effective transition program is to empower pediatric patients and provide them with the necessary tools to support the move from caregiver (i.e. parents) directed care to disease self-management. Yet, decision-making, a core skill of self-management, is primarily conducted by caregivers and clinicians on behalf of pediatric patients. The missed opportunity to practice and develop decision-making skills in a safe and mentored setting contributes to the poor health-related decisions and self-management by CKD youth. Collaborative decision making (CDM) recognizes the importance of involving the pediatric patient, eliciting their values and preferences, while also targeting involvement to the child’s developmental level and capacity. While CDM supports the engagement among all stakeholders, there is still much to learn about how to best empower CKD youth to assume a more active role in decision making as they transition to independent self-management. The overall goal of this research is to explore how a CDM tool can better support CKD youth and provide them with key, lifelong skills required for successful self-management. In Aim 1, we plan to first understand the current state of CDM with CKD youth and then define how to best engage CKD youth in CDM (i.e. desired state). This work will result in a detailed description of the opportunities to support CDM. In Aim 2, we will develop the tools and methods required to achieve the desired state of CDM and will lead to the development of a youth-focused CDM tool: Kids CoLab!. Finally, in Aim 3 we will pilot Kids CoLab!, to evaluate if a well-designed CDM tool can support collaborative decision-making skills, youth engagement in decision-making, and improve outcomes. At the conclusion of the grant, we will have clearly described how to best support the unique decision-making needs of CKD youth during their transition to independent self-management.