UK Renal Registry

ILD45

For children, end-stage kidney disease (ESKD) is a major health problem and requires renal replacement therapy (RRT) to stay alive: dialysis or kidney transplantation. In many cases, children receiving RRT have additional medical problems alongside their kidney condition. These are referred to as comorbidities. For these children and their families, additional health concerns may affect the care and treatment received for their kidney condition. It can be very difficult to record this information accurately as comorbidities may change over time, both in their number and severity. This results in incomplete information, which can be difficult to use in research. In 2017, a national project aimed to improve the quantity and quality of information held for children on RRT. Kidney units were asked to update existing comorbidity information held for their patients. We now wish to compare this information with information collected from Hospital Episode Statistics (HES), to understand how the UKRR can improve the completeness of information held for patients. This is an internal audit project which will describe the burden of comorbidity for children with ESKD. It will also compare the completeness of UKRR-held comorbidity information against HES records. Auditing the UKRR data will allow us to see gaps in information and how we can improve the data collection process. This will be the first report to describe the scale of co-existing medical conditions in children with the first report to validate UKRR data against another electronic health resource. We hope the findings of this project will lead to increased awareness of differences in treatment and outcomes for children with comorbidity. This will allow us to develop guidelines to ensure children with co-existing medical conditions have access to best care.

10/03/2020