ESPN 53rd Annual Meeting

ESPN 2021


 
The spectrum of disease in children with established kidney failure using registry and linked electronic health record data
LUCY PLUMB 1 RETHA STEENKAMP 1 ALEXANDER HAMILTON 2 HEATHER MAXWELL 3 CAROL INWARD 4 STEPHEN MARKS 5 DOROTHEA NITSCH 1

1- UK RENAL REGISTRY
2- POPULATION HEALTH SCIENCES, UNIVERSITY OF BRISTOL MEDICAL SCHOOL
3- DEPARTMENT OF PAEDIATRIC NEPHROLOGY, ROYAL HOSPITAL FOR CHILDREN, GLASGOW, UK
4- UNIVERSITY HOSPITALS BRISTOL & WESTON NHS FOUNDATION TRUST
5- UNIVERSITY COLLEGE LONDON GREAT ORMOND STREET INSTITUTE OF CHILD HEALTH, NIHR GREAT ORMOND STREET HOSPITAL BIOMEDICAL RESEARCH CENTRE, LONDON, UK
 
Introduction:

Children with established kidney failure may have additional medical conditions that impact upon care and outcomes for their kidney disease. This data is often not collected as part of a core dataset by kidney registries, resulting in data capture of variable completeness and accuracy. The aim of this study was to audit data on coexisting disease held by the UK Renal Registry (UKRR) against national electronic health record data using Hospital Episode Statistics (HES).

Material and methods:

The study population comprised English children aged <18 years receiving kidney replacement therapy (KRT) for >90 days on 31/12/2016. The proportion of children coded for co-existing disease variables as captured by the UKRR were compared to relevant ICD-10 diagnostic codes in HES. 

Results:

Linked HES data was available for 808 (62% male) children at the end of 2016. The median age was 12.0 (IQR 7.8-15.3) years. Using UKRR data, 23.1% of children had no additional diagnoses. Higher proportions of disease were noted in the UKRR dataset for most disease variables (9/12); higher proportions of cerebral palsy (12 versus 4%) and congenital anomalies (73 versus 47%) were recorded by HES. HES data offered a more comprehensive picture of co-existing disease not currently captured by the UKRR dataset: a strong male preponderance was noted among gastrointestinal, genetic, respiratory, and perinatal disease. UKRR data showed a female predominance for malignancy and chromosomal anomalies while prematurity, congenital anomalies and congenital heart disease affected males more frequently.

Conclusions:

This is the first study to report the spectrum of co-existing disease for UK children with established kidney failure using registry and electronic health data. Electronic health record data offers a comprehensive overview of all disease groups, which will help facilitate future audit and research of this cohort.