Live-births, survival, and hospitalisation rates of children and young people with Down syndrome 1990–2015: a birth cohort study

Hughes-McCormack, L.; McGowan, R.; Pell, J.; McKay, D.; Henderson, A.; O'Leary, L.; Cooper, S.-A.

Abstract

Introduction: The aim was to investigate population live-births, survival, and hospitalisations of children/young people with and without Down syndrome in Scotland.

Methods: All live-births with Down syndrome, 1990–2015, identified via Scottish cytogenetic laboratories, each age-gender-neighbourhood deprivation matched with 5 non-Down syndrome live-births. Record-linkage to routinely collected hospital admission data (Scottish Morbidity Records 01) and deaths (National Records of Scotland). Comparisons made using time to event analysis for risk of death/first hospitalisation/readmission, linear regression for length of hospital stay, estimating Hazard Ratios (HR) (95% CI), accounting for other factors.

Results: 1,458 live-births with Down syndrome [689 females (47.3%), 769 males (52.7%)]; population prevalence = 9.8/10,000 live-births. Their survival rate was lower (93.5%) than controls (99.6%). Total admissions were higher (n = 10,563 versus n = 8,802); admission incidence = 759.4/1000-person years versus 194.5/1,000-person years; with more admissions for coronary heart failure, otitis media, constipation, gastro-esophageal reflux disease; higher readmission rates (n = 988; 66.8% versus n = 1,700; 26.3%); more emergency admissions (n = 899; 77.6% versus n = 2,410; 72.0%); longer admission duration (4.80 days versus 1.30 days); and younger admission age (1.07 years versus 3.33 years).

Implications: Time in hospital might impact on child development and family relationships, so additional to having learning disabilities, their greater hospitalisation highlights the need for additional support for children with Down syndrome and their families

Citation

Hughes-McCormack, L., McGowan, R., Pell, J., McKay, D., Henderson, A., O'Leary, L., & Cooper, S.-A. (2019). Live-births, survival, and hospitalisation rates of children and young people with Down syndrome 1990–2015: a birth cohort study. Journal of Intellectual Disability Research, 63(7), 799. https://doi.org/10.1111/jir.12660

• Journal Article Type: Article
• Acceptance Date: Feb 12, 2019
• Online Publication Date: Jun 27, 2019
• Publication Date: 2019-07
• Deposit Date: Feb 25, 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/4131466