UK Renal Registry

ILD140

Kidney failure (or ‘end-stage kidney disease’) occurs when the kidneys no longer work as they are supposed to or have stopped working altogether. This is not survivable without kidney replacement therapies (KRT) such as dialysis (blood cleaning) or kidney transplantation. KRT offers a chance for survival but isn’t a cure and can fail. In some cases, KRT can be difficult to perform. KRT can also be burdensome for patients and families, with unwanted symptoms and restrictions on daily life. It can also have serious complications. This can lead to difficult treatment decisions for families and clinical teams. In some cases, it is in the child’s best interests not to start KRT and instead offer conservative care. This can be described as treatment of the child’s kidney condition without the use of KRT. It includes managing symptoms of the kidney condition while providing support to the child and family. It may also include end-of-life care. Currently, we do not know how many children reach kidney failure but do not receive KRT. We also do not know whether these children differ (in terms of characteristics or disease type) compared to those who receive KRT during the same period. We will be combining data from the UK Renal Registry with data from a study through the British Paediatric Surveillance Unit (BPSU) to compare the characteristics of children receiving conservative care to those starting KRT. This study will help describe the scale of kidney failure in UK children. It will help identify where variations in access to care are across the country and whether there are differences in KRT use by demographics or disease type for UK children.