A prospective study of conservative care in childhood ESKD
Research type
Research Study
Full title
A prospective surveillance study of conservatively managed children with end-stage kidney disease in the United Kingdom and Republic of Ireland.
IRAS ID
263328
Contact name
Lucy Plumb
Contact email
Sponsor organisation
The Renal Association: UK Renal Registry
Duration of Study in the UK
3 years, 2 months, 1 days
Research summary
Kidney Disease is a major health problem for children, their families and the NHS. Progression to end-stage kidney disease (ESKD) means renal replacement therapy (RRT) is considered: either as dialysis or a kidney transplant. While RRT offers a chance of survival, it isn’t a cure and life-long treatment can be burdensome and technically challenging. In some cases, it is in the child’s best interests not to pursue long-term RRT and instead opt for conservative care. This is described as active support of the child's kidney condition without RRT. It can also include palliative, end-of-life care.
National registries collect information on ESKD children receiving RRT. However, little information is known about those who don’t receive RRT. In the UK, we do not know how many children this affects, what kidney conditions they have or the reasons for choosing conservative care.
Our aim is to identify children reaching ESKD for whom a decision is made not to start long-term RRT. This study is supported by the British Paediatric Surveillance Unit (BPSU) which will ensure affected children are identified.
Doctors who identify children meeting reporting instructions will be asked to complete a questionnaire about the child and their care. Another questionnaire will be sent 12-months later to find out about the child's outcome after starting conservative treatment.
This study will increase our knowledge of childhood ESKD. It will be the first study to describe children with ESKD who are conservatively managed as well as factors important to families and medical teams when deciding on this route of care. It will also highlight multi-professional support received by families and whether this varies across the country. This study will help us understand where access to care and support for children with kidney failure can be improved.
REC name
South West - Central Bristol Research Ethics Committee
REC reference
19/SW/0197
Date of REC Opinion
1 Nov 2019
REC opinion
Favourable Opinion