Psychosocial access to kidney transplantation in children

• Research type

  Research Study

• Full title

  Investigating the modifiable psychosocial variables influencing access to and outcomes after kidney transplantation in children

• IRAS ID

  270493

• Contact name

  Ji Soo Kim

• Contact email

  jisoo.kim@nhs.net

• Sponsor organisation

  Great Ormond Street Hospital for Children NHS Foundation Trust

• Duration of Study in the UK

  3 years, 6 months, 1 days

• Research summary

  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

• REC name

  Wales REC 4

• REC reference

  20/WA/0285

• Date of REC Opinion

  10 Nov 2020

• REC opinion

  Favourable Opinion