Title: Investigating the modifiable psychosocial variables influencing access to and outcomes after kidney transplantation in children
Funder: Department of Health and Social Care

Abstract: Research question: What are the actual or perceived psychosocial barriers to paediatric renal transplantation and are they associated with poor transplant outcomes? Background: Psychosocial factors have been identified as potential barriers to a kidney transplant and may lead to poor outcomes. However, there is limited evidence detailing these factors and consequently there are inconsistencies between paediatric nephrology units in managing these challenges. Aims and objectives: Aim: To evaluate the psychosocial factors that are actual or perceived barriers to paediatric renal transplantation which may be associated with poor transplant outcome. Objectives: Describe the psychosocial factors perceived by clinicians as barriers to renal transplantation. Describe current interventions (if any) implemented to address these psychosocial factors. Explore the experiences of Child and Young People (CYP) and their families of any psychosocial challenges or facilitators in accessing a kidney transplant Measure the prevalence of identified psychosocial factors (positive and negative) in the national cohort of patients on dialysis or listed for transplant. Synthesise findings from each phase to inform recommendations about which psychosocial factors are potential barriers or facilitators to accessing kidney transplantation.Methods: This is a prospective, observational, cross-sectional and longitudinal, mixed-methods study across all 13 paediatric nephrology units in the United Kingdom. It will be conducted in three phases over 42 months. Phase one (12 months): In-depth qualitative data will be collected about clinician, patient and family perceptions of psychosocial factors that are barriers to transplantation or ideal transplant outcomes. Data will also provide a description of current interventions available or being accessed by these families. Phase one data analysis will inform the second phase by generating insights that could be verified in a quantitative study. Phase two (18 months): A quantitative study will investigate whether factors perceived as psychosocial barriers result in poor access or outcome compared to other children with Chronic Kidney Disease (CKD). Questionnaires will be administered at regular intervals and comparisons made between patients who continue to await transplantation with those transplanted during the study period. Phase three (12 months): Data generated from phases one and two will be synthesised to inform the development of recommendations about psychosocial factors and access to and outcomes of kidney transplantation. Anticipated impact and dissemination: The evaluation of key psychosocial factors will faciliate the development of psychosocial interventions for CYP with CKD and their families, which we plan to disseminate for national implementation to improve access to, and outcomes of, kidney transplantation. Guided by the Patient and Public Involvement Advisory Group (PPIAG), a dissemination strategy will be constructed to reach a wider audience of research participants, professionals and families whose CYP have CKD. Clinicians both in nephrology units and in the community will become better equipped in identifying psychosocial factors that challenge or facilitate kidney transplantation. The results can be utilised in policy-making and standardising care across the UK to optimise kidney transplant access, thereby maximising health and quality of life of CYP with CKD.

Lay abstract: Aims:To understand the psychological and social reasons why a child or young person may not receive a kidney transplant. We want to help children's kidney units across the UK promptly identify and manage these psychological and social issues. Background:Around 1000 children and young people (aged 0 to 18 years) have kidneys that are too damaged to recover leading to shorter lives of poorer quality than healthy children. A successful kidney transplant could help these children live longer and healthier lives. This is also cost-effective for the NHS compared to kidney replacement therapy with dialysis. However, there is a limited supply of good quality kidneys available to transplant in the UK. There are differences in how available kidneys are allocated across the UK, but we do not know why there are differences. Our preliminary data of NHS professionals working in 13 UK children's kidney units were asked what is preventing patients from receiving a kidney transplant. Transplantation was delayed in almost one-fifth of chilldren and young people because they had psychological or social problems. To tackle the shortage of good quality organs, a new 'Opt-out law' is being introduced in 2020 to encourage more organ donation in England. We know from work of adults in the UK, the ATTOM (Access to Transplantation and Transplant Outcome Measures) programme explored differences in access to transplant between kidney units and studied patient-reported outcomes including quality of life (QoL). ATTOM findings on patients' experiences and views influenced the new national kidney offering scheme. We now need to examine these psychological and social barriers and ensure every child who is likely to benefit from a transplant, has a similar chance of receiving one. Earlier identification and management of these problems may allow children and young people to receive kidney transplants in a more timely fashion. Design The project is divided into three phases: Face-to-face or phone interviews will be undertaken to understand the psychological and social challenges children and young people with kidney problems and their families face. These will be carried out with:(a) Children and young people who are waiting for a kidney transplant, and their families (b) NHS professionals from all 13 UK children's kidney units Using information from the interviews, we will select existing questionnaires which measure the problems identified in the interviews. To understand how widespread these problems are in the UK, questionnaires will be sent to:(a) All children and young people waiting for a kidney transplant, and their parents(b) NHS professionals from 13 children's kidney units Children and young people who receive a kidney transplant during the study will be sent follow-upquestionnaires to understand if their psychological and social well-being changes. Information from the interviews and questionnaires will be analysed to produce national guidelinesPatient and Public Involvement An advisory group of children and young people who received a kidney transplant and their parents will guide the study to ensure that each part of the study is user-friendly and relevant. Regular newsletters and updates will be placed on the KRUK charity website for easy access by children and young people with kidney problems and their families so that they are kept up to date with our research progress. Dissemination We will present our findings through academic publications, newsletters, websites, national and international meetings to the following: People who took part in the research Children and young people with kidney problems and their families NHS Professionals looking after these children Other professionals in the community, such as teachers International community of health professionals looking after children with kidney problems

Research activity codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING;6.4 SURGERY
Health categories: RENAL AND UROGENITAL