Introduction: Kidney transplantation, compared with dialysis, is seen as the gold standard management for children with Stage 5 Chronic Kidney Disease (CKD-5). A cross-sectional survey of 12 UK paediatric nephrology centres on their transplantation plans for all children registered with CKD-5 revealed that 19% of children had psychosocial factors listed as a barrier to transplantation. However, it is unclear what these factors are.
A prospective multicentre (12 UK paediatric nephrology centres) exploratory mixed-methods study, with the aim to investigate these psychosocial factors, has been designed, implemented and now completed recruitment. We aim to report an update from this study and describe the baseline participant characteristics and questionnaire output from the quantitative phase to date.
Methods: We approached all families whose child with CKD-5 was being prepared for kidney-only transplantation, including children whose previous allograft had failed. Age-appropriate and validated questionnaire packs for children and their carers were distributed at pre-transplant baseline. These questionnaire packs collected psychosocial data including quality of life (QoL), mental health, family dynamics and relationship with healthcare. Follow-up questionnaires were distributed again either 1-year later or at 3-, 6- and 12-months post-transplant. Baseline medical data were collected prospectively from medical notes.
Results: 123 families were recruited to the study. 83 families have responded to their questionnaires to date, giving a 67% response rate. Where ethnicity has been reported, majority of families were White (76.6%), followed by Asian (11.7%), Mixed-race (7.8%) and Black (3.9%). Majority of families had two carers living in the same household (74.0%), followed by single carer (19.5%), two carers living in separate households (5.2%) and other configurations (1.3%). Most carers reported their highest level of education as a college or university degree (52.4%), followed by secondary education (14.3%), post-graduate education (11.9%) and primary education (2.4%).
Conclusions: These preliminary findings reveal the demographics of families most likely to engage in longitudinal research examining psychosocial factors influencing access to kidney transplantation. Further analysis is required to examine the changes in psychosocial factors over time and their associations with kidney transplantation access and outcomes.