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Renal failure
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Aim: 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 issues.
Background: Around 1000 children and young people have kidneys too damaged to recover, leading to shorter lives of poorer quality than healthy children. A successful kidney transplant could help them live longer and healthier lives. This is also cost-effective for the NHS compared with dialysis.
However, there is a limited supply of good quality kidneys for transplanting. There are differences in how available kidneys are allocated across the UK, but we do not know why. NHS professionals were asked what is delaying patients from receiving a kidney transplant. The survey showed almost one-fifth of children and young people had delays because of psychological or social issues.
We now need to understand what these issues are. This way, every child who would benefit from a transplant, have a similar chance of receiving one.
The project is divided into three phases:
1. Face-to-face, phone or video-call interviews will be done to understand what matters to children and young people with kidney problems and their families. These will be done 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
2. We will then select questionnaires that can measure the issues identified in the interviews. Questionnaires will be sent across the UK to all families whose children are waiting for a kidney transplant. Families who receive a kidney transplant during the study will be sent follow-up questionnaires to understand if their psychological and social well-being change.
3. Information from the interviews and questionnaires will be analysed to produce national recommendations
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Qualitative;
You can take part if:
You may not be able to take part if:
• Participants unable to give informed consent • Where the child, young person, parent or carer are deemed too unwell to participate by the managing medical team due to their recent acute hospital admission in the last 14 days
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST and funded by NIHR Academy .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 47330
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
