Hospital admissions in infants with Down syndrome: a record-linked population-based cohort study in Wales

Regine Angela Esperanza, Annette Evans, David Tucker, Shantini Paranjothy, Lisa Hurt* (Corresponding Author)

*Corresponding author for this work

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Background: Despite recent advances, mortality in children with Down syndrome remains 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 children without Down Syndrome in a population-based cohort.

Methods: This 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 dataset 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 October 31st 24 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.

Results: We included 324,060 children, 356 of whom had Down syndrome. 80.3% of infants with Down syndrome had at least 1 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 (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.

Conclusion: Infants 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.
Original languageEnglish
Pages (from-to)225-239
Number of pages15
JournalJournal of Intellectual Disability Research
Issue number3
Early online date3 Dec 2021
Publication statusPublished - Mar 2022

Bibliographical note

This research was supported by The Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer), a UK Clinical Research Collaboration Public Health Research Centre of Excellence, and The Centre for the Improvement of Population Health through E-records Research (CIPHER). CIPHER was funded by: Arthritis Research UK, the British Heart Foundation, Cancer Research UK, the Chief Scientist Office (Scottish Government Health Directorates), the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the Medical Research Council, the National Institute for Health Research, the National Institute for Social Care and Health Research (Welsh Government), and the Wellcome Trust (Grant reference: MR/K006525/1). The development of the Wales Electronic Cohort for Children (WECC) was supported by a Translational Health Research Platform Award from the National Institute for Social Care and Health Research (grant reference: TPR08-006).

Data Availability Statement

The data used in this study are available in the Secure Anonymised Information Linkage (SAIL) databank at Swansea University, Swansea, UK. SAIL has established an application process to be followed by anyone who would like to access data via SAIL ( process). All proposals to use SAIL data are subject to review by an independent Information Governance Review Panel (IGRP). Before any data can be accessed, approval must be given by the IGRP. The IGRP gives careful consideration to each project to ensure proper and appropriate use of SAIL data. When access has been granted, it is gained through a privacy-protecting safe haven and remote access system referred to as the SAIL Gateway. Relevant information to allow acquisition of a replicable dataset is available in the paper, or can be requested from the authors. Please contact for more detail on data access requests.


  • Down syndrome
  • infants
  • children
  • hospitalisation
  • co-morbidity


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