Comparing mortality and hospital admissions to five years of age in children with and without Down syndrome within and across counties 2003–2012: an electronic record matched cohort study in Scotland and Wales

Hughes-McCormack, L.; Evans, A.; Hurt, L.; McGowan, R.; Pell, J.; Daniel, R.; Demmler, J.; Bandyopadhyay, A.; McKay, D.; Henderson, A.; O'Leary, L.; Paranjothy, S.; Cooper, S.-A.

Abstract

Introduction: This study aims to investigate population survival and hospitalisations of children with and without Down syndrome in two UK countries, Scotland and Wales.

Methods: All live-births with Down syndrome, 2003–2012, were identified via all cytogenetic laboratories (Scotland) and congenital anomaly register & information service (Wales). Children with Down syndrome were matched to 5 non-Down syndrome live-births on age, gender, month and year of birth, neighbourhood deprivation. In Scotland, non-Down syndrome children had to be alive on the date of Down syndrome cytogenetic test results (86.7% results obtained <1 month). This was not possible in Wales; instead, only children surviving to 1 month of age were included. Record-linkage to hospital admission data (Scottish Morbidity Records 01; Patient Episode Database for Wales), and deaths (National Records of Scotland and Office of National Statistics for Wales) was done. Time to event analysis was used to compare time to death and to first/all hospitalisations.

Results: Prevalence of Down syndrome live-births in both countries was 0.11%. Survival of children with Down syndrome at 1 year was 96.4% (CI 94.6–97.6) in Scotland and 97.3% (CI 94.8–98.6) in Wales, at 5 years was 94.8% (CI 91.7–96.8) in Scotland and 94.1% (CI 90.5–96.3) in Wales. Emergency and elective hospital admissions data will also be presented.

Implications: Survival of children with Down syndrome is similar in both Scotland and Wales.

Citation

Hughes-McCormack, L., Evans, A., Hurt, L., McGowan, R., Pell, J., Daniel, R., Demmler, J., Bandyopadhyay, A., McKay, D., Henderson, A., O'Leary, L., Paranjothy, S., & Cooper, S.-A. (2019). Comparing mortality and hospital admissions to five years of age in children with and without Down syndrome within and across counties 2003–2012: an electronic record matched cohort study in Scotland and Wales. Journal of Intellectual Disability Research, 63(7), 799. https://doi.org/10.1111/jir.12660

• Journal Article Type: Article
• Acceptance Date: May 14, 2019
• Online Publication Date: Jun 11, 2019
• Publication Date: Jul 3, 2019
• Deposit Date: Feb 26, 2025
• Journal: Journal of Intellectual Disability Research
• Print ISSN: 0964-2633
• Electronic ISSN: 1365-2788
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 63
• Issue: 7
• Pages: 799
• DOI: https://doi.org/10.1111/jir.12660
• Keywords: Down syndrome, survival, hospital admissions, health
• Public URL: http://researchrepository.napier.ac.uk/Output/4131478