Conservative care in end-stage kidney disease
This surveillance study commenced in September 2020. This study aimed to identify children with ESKD who receive conservative care, to understand how the decision not to start renal replacement therapy is made and important factors that are considered in this decision-making process.
Overview
Chronic kidney disease describes damaged kidneys. In ‘end-stage kidney disease’ (ESKD), kidneys don’t work as they are supposed to or have stopped working altogether. This is not survivable without treatments known as renal replacement therapy (RRT). RRT includes dialysis (blood cleaning) or kidney transplantation.
While RRT offers a chance of survival, it is not a cure and can fail. Reaching ESKD early in life means children depend on RRT their whole lives. This can be burdensome and, in some cases, difficult to perform due to patient size or other medical problems. For some children, it may be in their best interests not to start RRT and to instead offer conservative care. Conservative care is a term used to describe treatment of a child’s kidney disease without RRT. It includes managing symptoms or complications of their kidney condition. It may also include end-of-life care.
This study aims to identify children with ESKD who receive conservative care. We wish to understand how the decision not to start RRT is made and important factors that are weighed up. Running this study through the BPSU will mean affected children, who may be under general or specialist paediatricians, can be recognised. It is hoped that findings from this study will help to inform children and families about treatment options for ESKD. It will also help professionals to provide equal access to high-quality care for affected children and families.
Investigators
Dr Lucy Plumb
UK Renal Registry
Southmead Hospital
Southmead Road
Westbury-on-Trym
Bristol BS10 5NB Email: lucy.plumb@nhs.net