Manchester University NHS Foundation Trust

ILD18

Children with kidney failure requiring renal replacement therapy (RRT) have about a 30 times greater risk of dying compared with healthy children. Young children and those on dialysis are at greatest risk of death. In the UK, the Renal Registry (UKRR) collects information about children on long-term (greater than 90 days) RRT. Between 2000 and 2014, 99 children on RRT under 16 years old died. Very little is known about this group and the circumstances surrounding their deaths. We intend to conduct an audit of paediatric patient deaths who received RRT between 2000 and 2015. Deceased RRT patients over this 16-year period will be identified and the clinical team responsible for their RRT management will be contacted by the UKRR. They will be asked to complete a proforma relating to circumstances around and cause of death. We will then report the number of deaths compared to the general child population. We will also examine the circumstances and causes of death for this group and compare these to existing literature. We hope this audit will inform clinicians, improve completeness of UKRR data and allow us to make sure coding systems used for children’s deaths are relevant and accurate. This project aims to report the circumstances of death for paediatric patients who received RRT in the UK over the past sixteen years. This project will help us to understand risk factors for death across age and disease groups. It will also help determine whether current data fields used within the British Association for Paediatric Nephrology (BAPN) database accurately capture information on the causes of death and comorbidities associated with mortality for this population. This, in turn, will help us to design and develop datasets that can be used for future research.

22/01/2018