Introduction: Kidney transplantation is the gold standard kidney replacement therapy in optimising health and improving quality of life in children with Stage 5 Chronic Kidney Disease (CKD-5).  However, multiple factors, including psychosocial and therapy adherence, have been cited to delay transplantation.  Moreover, we do not understand how transplantation delays influence the child’s quality of life (QoL).
Aim: We explored the factors delaying paediatric kidney transplantation across Europe, in particular psychosocial factors including therapy adherence.  We aimed to (1) understand the influence of psychosocial factors on transplantation time relative to other factors cited to delay transplantation and (2) examine changes in QoL and therapy adherence over time.
Methods: A multicentre, longitudinal registry study of 11 European paediatric nephrology centres was designed to prospectively collect pre-transplantation data on all patients receiving paediatric care with CKD-5 over 12 months, followed by one year post-baseline data.  We collected data on patient demographics, clinician-reported factors delaying transplantation, changes in kidney replacement therapy including transplantation during the study period, patient- and proxy-reported QoL and clinician-, patient- and proxy-reported therapy adherence all on a 1 to 5 Likert scale.
Results: Among 167 patient entries, 156 (93%) had adequate follow-up data for preliminary analysis and among patients with follow-up data, 53 (34%) had received a kidney transplant during the study period.  There were 203 entries describing factors contributing to kidney transplantation delay.  The most cited factors were donor availability (41.9%), disease-related (23.6%), size of the child (11.8%) and psychosocial (10.8%). Children having “psychosocial factors” delaying their transplant at baseline, were less likely to be among the children who received a kidney transplant (p = 0.02).  At pre-transplant baseline, there was no difference in clinician-, patient- or carer-reported therapy adherence between those who later received a transplant and those who did not.  Transplanted children were more likely to report a better QoL score at pre-transplant baseline than those who did not (p = 0.03).  We examined therapy adherence and QoL over time in children who did not receive a transplant.  Although there was no significant difference in therapy adherence (clinician-reported p = 0.7, patient-reported p = 0.3, carer-reported p=0.8), QoL scores declined after one year of waiting for a transplant (patient-reported p = 0.006, carer-reported p < 0.001).

Conclusion: Children with psychosocial factors delaying transplantation are more likely to experience greater delays in transplantation than those without.  There is no difference in therapy adherence between children who receive a transplant and those who experience delays. Children waiting more than one year for kidney transplantation are likely to experience significant decline in their QoL.