Great Ormond Street Hospital for Children NHS Foundation Trust

ILD147

When someone develops kidney failure, they need to receive dialysis or a kidney transplant. Kidney transplantation offers better health and quality of life than dialysis. In the UK, there are about 1000 children and young people who have kidney failure. However not every child who needs a kidney transplant is able to receive one. A national survey has shown that one fifth of children in the UK have faced delays in accessing a kidney transplant due to ‘psychosocial’ reasons. However, it is not clear what these factors are and how they influence a child’s ability to receive a kidney transplant in the UK. This study will explore what these psychosocial factors are and how they influence access to and outcomes after kidney transplantation in children living in the UK. We have already conducted our first phase where we interviewed families and NHS professionals about which psychosocial factors they think are important. The second phase of the study explores how the psychosocial factors highlighted in the first phase impact families in the UK. We have collected information from families about their mental health and social background before and after their child’s kidney transplantation. All children (aged 0-17 years) with kidney failure who are on dialysis, being prepared for pre-emptive kidney transplantation, on the waiting list for deceased donation or awaiting living donation, will be invited. The families have agreed we can link their mental health and social information with their child’s relevant background and medical information held by the UKRR and NHSBT. This way we can see if families with certain mental health or social backgrounds experience delays in accessing a transplant or poor transplant outcomes. We have recruited 124 families to the study. Follow up will range between 1 to 2 years per patient. This project will generate data that will establish whether measures of quality of life and psychosocial health change over time and if transplantation influences this. It will also identify specific significant psychosocial contributors that potentially influence transplant access and outcomes. Therefore, this project will provide a step towards addressing health inequalities faced by patients and their families when accessing a kidney transplant and their post-transplant outcomes thereafter.