Paediatric Kidney Patient Reported Experience Measure

• Research type

  Research Study

• Full title

  Paediatric Kidney Patient Reported Experience Measure - developing and validating an experience measure for under 18 year olds

• IRAS ID

  331789

• Contact name

  Prof Wendy Wills

• Contact email

  w.j.wills@herts.ac.uk

• Sponsor organisation

  University of Hertfordshire

• Duration of Study in the UK

  2 years, 0 months, 1 days

• Research summary

  Chronic kidney disease is a condition where your kidneys do not work as they should or have stopped working completely. It affects 3500-4000 children and young people in the UK. Treatment needs specialist hospital care and can cause long-lasting effects on physical health, mental health and life expectancy.
  
  It is important to make sure patients experience of their care is positive. Tools called patient-reported experience measures (PREMs) can help collect this information. In the UK, a Kidney PREM has been used for adult patients since 2016. This may not reflect the experience of children and young people and we know from studies that they want to share their experiences and be heard.

  Our aim is to develop a PREM for use in UK children and young people with kidney disease. To do this we will:
  - Interview children and young people with kidney disease to learn more about their experiences.

  - Use these interviews to develop a PREM. We will check the PREM is clear and easy to understand using a technique called cognitive interviewing.

  - Pilot the PREM among children and young people in the UK.

  - Use the pilot to check the questions will collect the correct information when answered by different children.

  - Young people, families and adults with kidney disease are involved in the development of this PREM. They will help us co-develop the study and share findings by co-producing an easy-to-understand summary.

  - We will use the PREM to identify how to improve experiences of care.

  This is the first study to develop and test a PREM for children and young people with kidney disease. It has the support of all UK kidney centres caring for children and young people, the UK Kidney Association, the British Association for Paediatric Nephrology and the Kidney Care UK charity.

• REC name

  East Midlands - Leicester Central Research Ethics Committee

• REC reference

  24/EM/0215

• Date of REC Opinion

  28 Oct 2024

• REC opinion

  Further Information Favourable Opinion