Abstract

BackgroundDespite recent advances, mortality in children with Down syndrome remains five times higher than in the general population. This study aims to describe the burden, patterns and causes of hospital admissions in infants with Down syndrome, and compare this with infants without Down syndrome in a population‐based cohort.MethodsThis study used data from the Wales Electronic Cohort for Children, a cohort of all children born in Wales between 1990 and 2012. The cohort was generated from routine administrative data, linked to create an anonymised data set within the Secure Anonymised Information Linkage databank. This analysis is based on all infants born between January 2003 and January 2012 who were followed to their first birthday, a move out of Wales, death, or until 31 October 2012 (end of follow‐up). Infants with Down syndrome were identified using the Congenital Anomaly Register and Information Service in Wales. Multivariable Cox regression was used to compare the time to first hospital admission. Admission codes were used to identify the commonest indications for hospitalisation and to determine the presence of other congenital anomalies.ResultsWe included 324 060 children, 356 of whom had Down syndrome. Of infants with Down syndrome, 80.3% had at least one hospital inpatient admission during the first year of life, compared with 32.9% of infants without Down syndrome. These first admissions were earlier [median of 6 days interquartile range (IQR) (3, 72) compared with 45 days [IQR 6, 166)] and longer [median of 4 days (IQR 1, 15) compared with 1 day (IQR 0, 3)] than in infants without Down syndrome. The most common causes of admissions were congenital abnormalities, respiratory diseases, conditions originating in the perinatal period and infectious diseases. The presence of other congenital abnormalities increased hospitalisations in all infants, but more so in infants with Down syndrome who spent a median of 21 days in hospital (IQR 11, 47) during their first year of life.ConclusionInfants with Down syndrome are at high risk for early, more frequent and longer hospital admissions. Congenital heart disease and respiratory infections remain a major burden in this population. More research is needed to understand how to better manage these conditions particularly in the first month of life when most admissions occur.

Highlights

  • Despite recent advances, mortality in children with Down syndrome remains five times higher than in the general population

  • Infants with Down syndrome are at high risk for early, more frequent and longer hospital admissions

  • To identify infants with other major congenital anomalies, we examined the first PEDW code for each admission in every child; if any of these included a code from the ‘Congenital malformations, deformations and chromosomal abnormalities’ ICD-10 chapter (Q codes) that were not Down syndrome, we considered that the child had a major congenital anomaly

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Summary

Introduction

Mortality in children with Down syndrome remains five times higher than in the general population. The characteristic profile of Down syndrome includes several dysmorphic features, developmental delay and associations with multiple morbidities. It is the most common genetic cause of intellectual disability, accounting for approximately 12.5% of cases (Bittles et al 2002). Children with Down syndrome are at higher risk of low birthweight, pre-term deliveries and cardiac defects, leading to complications and increased mortality (Goldman et al 2011; Kucik et al 2013; Glasson et al 2016). The overall fatality rate among children with Down syndrome remains high, at more than five times than the general population (Weijerman et al 2008). To ensure that children with Down syndrome are receiving appropriate and timely health care, it is important to understand the causes of ill-health from early life

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