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.
