Chronic kidney disease (CKD) or end stage kidney disease (ESKD) in children is devastating. The overall annual mortality rate for children with ESKD is around 30 times higher than the age matched general population. Cancer after kidney transplantation in adults contributes to mortality risk, but the impact on childhood transplant recipients is unclear. Cancer is not the only complication of transplantation, with disease recurrence a possibility for some children, particularly those with focal segmental glomerulosclerosis (FSGS). In addition, the detrimental effect of kidney disease on the quality of life (QoL) of adults is well known, but poorly described in children across all stages of kidney disease. Finally, adolescents with kidney disease need to transition to adult care. This is well known to be a high-risk period for graft loss and other complications, but the optimal method for transitioning care is unknown.
The aim of this program of research was to define long-term medical and psychosocial outcomes for children with CKD and the risk factors for these outcomes. The first chapter summarizes research around selected psychosocial (QoL) and medical (cancer and disease recurrence) complications of CKD. Chapter 2 investigates the QoL of children with kidney disease. Chapter 3 describes the incidence and predictors of skin and non-skin cancers after childhood kidney transplantation. Chapter 4 compares the incidence of post-transplant lymphoproliferative disease (PTLD) between adult and paediatric kidney transplant recipients and chapter 5 investigates the patient and graft survival after a diagnosis of PTLD. Chapter 6 examines the incidence and risk factors of FSGS recurrence. Chapter 7 details treatments of recurrent FSGS in children and adolescents. Finally, chapter 8 explores complications surrounding transition to adult care and details different models of care.