Transition of Care in Children with Chronic Kidney Disease, Dialysis, and Transplantation

Improvement in management of pediatric renal disorders has led to patient survival rates of 85-90%, increasing the number of adolescent and young adult (AYA) patients with childhood onset chronic kidney disease (CKD) transitioning to adult care settings. Pediatric CKD patients differ from adults with CKD in view of early onset of disease (sometimes with fetal onset), different disease spectrum, the potential effect of CKD on neurodevelopment, and substantial involvement of parents in medical decision making. In addition to the usual challenges of emerging adulthood (graduation from school to work, independent living, peak in impulsivity and risk-taking behaviors), young adults with pediatric CKD need to learn to manage a serious medical condition independently. In kidney transplant patients, regardless of the age at transplantation, graft failure rates are higher during adolescence and young adulthood than at any other age. All pediatric CKD patients must move from a pediatric to adult-focused settings and this transition is a longitudinal process requiring collaboration and interactions of AYA patients, their families, providers, health care environment and agencies. Consensus guidelines have provided recommendations to pediatric and adult renal teams to enable successful transition. Suboptimal transition is a risk factor for poor adherence to treatment and unfavorable health outcomes. The authors discuss the process of transition as it applies to pediatric CKD patients and review challenges faced by patients/families, pediatric and adult nephrology teams. They provide some suggestions and available tools to optimize the transition of pediatric CKD patients to adult-oriented care.