Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study

Objective To investigate current Down syndrome live birth and death rates, and childhood hospitalisations, compared with peers.Setting General community.Participants All live births with Down syndrome, 1990–2015, identified via Scottish regional cytogenetic laboratories, each age–sex–neighbourhood d...

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Main Authors: Daniel Mackay, Laura Anne Hughes-McCormack, Angela Henderson, Sally-Ann Cooper, J P Pell, Ruth McGowan, Lisa O'Leary
Format: Article
Language:English
Published: BMJ Publishing Group 2020-04-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/10/4/e033770.full
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author Daniel Mackay
Laura Anne Hughes-McCormack
Angela Henderson
Sally-Ann Cooper
J P Pell
Ruth McGowan
Lisa O'Leary
author_facet Daniel Mackay
Laura Anne Hughes-McCormack
Angela Henderson
Sally-Ann Cooper
J P Pell
Ruth McGowan
Lisa O'Leary
author_sort Daniel Mackay
collection DOAJ
description Objective To investigate current Down syndrome live birth and death rates, and childhood hospitalisations, compared with peers.Setting General community.Participants All live births with Down syndrome, 1990–2015, identified via Scottish regional cytogenetic laboratories, each age–sex–neighbourhood deprivation matched with five non-Down syndrome controls. Record linkage to Scotland’s hospital admissions and death data.Primary outcome HRs comparing risk of first hospitalisation (any and emergency), readmission for children with Down syndrome and matched controls were calculated using stratified Cox proportional hazards (PH) model, and length of hospital stay was calculated using a conditional log-linear regression model.Results 689/1479 (46.6%) female and 769/1479 (51.9%) male children/young people with Down syndrome were identified (1.0/1000 births, with no reduction over time); 1235 were matched. 92/1235 (7.4%) died during the period, 18.5 times more than controls. More of the Down syndrome group had at least one admission (incidence rate ratio(IRR) 72.89 (68.72–77.32) vs 40.51 (39.15–41.92); adjusted HR=1.84 (1.68, 2.01)) and readmissions (IRR 54.85 (51.46–58.46) vs 15.06 (14.36–15.80); adjusted HR=2.56 (2.08, 3.14)). More of their admissions were emergencies (IRR 56.78 (53.13–60.72) vs 28.88 (27.73–30.07); first emergency admission adjusted HR=2.87 (2.61, 3.15)). Children with Down syndrome had 28% longer first admission after birth. Admission rate increased from 1990–2003 to 2004–2014 for the Down syndrome group (from 90.7% to 92.2%) and decreased for controls (from 63.3% to 44.8%).Conclusions We provide contemporaneous statistics on the live birth rate of babies with Down syndrome, and their childhood death rate. They require more hospital admissions, readmissions emergency admissions and longer lengths of stays than their peers, which has received scant research attention in the past. This demonstrates the importance of statutory planning as well as informal support to families to avoid added problems in child development and family bonding over and above that brought by the intellectual disabilities associated with Down syndrome.
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spelling doaj-art-0ee3debd1c9d43e98f8d736b43ecd6482025-08-20T02:19:54ZengBMJ Publishing GroupBMJ Open2044-60552020-04-0110410.1136/bmjopen-2019-033770Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort studyDaniel Mackay0Laura Anne Hughes-McCormack1Angela Henderson2Sally-Ann Cooper3J P Pell4Ruth McGowan5Lisa O'Leary6Institute of Health and Wellbeing, University of Glasgow, Glasgow, UKSchool of Health and Wellbeing, Mental Health and Wellbeing, University of Glasgow, Glasgow, UK2 Mental Health and Wellbeing, University of Glasgow School of Health and Wellbeing, Glasgow, UKInstitute of Health and Wellbeing, University of Glasgow, Glasgow, Scotland, UKSchool of Health and Wellbeing, University of Glasgow, Glasgow, UKWest of Scotland Centre for Genomic Medicine, Glasgow, UKSchool of Health and Social Care, Edinburgh Napier University, Edinburgh, Edinburgh, UKObjective To investigate current Down syndrome live birth and death rates, and childhood hospitalisations, compared with peers.Setting General community.Participants All live births with Down syndrome, 1990–2015, identified via Scottish regional cytogenetic laboratories, each age–sex–neighbourhood deprivation matched with five non-Down syndrome controls. Record linkage to Scotland’s hospital admissions and death data.Primary outcome HRs comparing risk of first hospitalisation (any and emergency), readmission for children with Down syndrome and matched controls were calculated using stratified Cox proportional hazards (PH) model, and length of hospital stay was calculated using a conditional log-linear regression model.Results 689/1479 (46.6%) female and 769/1479 (51.9%) male children/young people with Down syndrome were identified (1.0/1000 births, with no reduction over time); 1235 were matched. 92/1235 (7.4%) died during the period, 18.5 times more than controls. More of the Down syndrome group had at least one admission (incidence rate ratio(IRR) 72.89 (68.72–77.32) vs 40.51 (39.15–41.92); adjusted HR=1.84 (1.68, 2.01)) and readmissions (IRR 54.85 (51.46–58.46) vs 15.06 (14.36–15.80); adjusted HR=2.56 (2.08, 3.14)). More of their admissions were emergencies (IRR 56.78 (53.13–60.72) vs 28.88 (27.73–30.07); first emergency admission adjusted HR=2.87 (2.61, 3.15)). Children with Down syndrome had 28% longer first admission after birth. Admission rate increased from 1990–2003 to 2004–2014 for the Down syndrome group (from 90.7% to 92.2%) and decreased for controls (from 63.3% to 44.8%).Conclusions We provide contemporaneous statistics on the live birth rate of babies with Down syndrome, and their childhood death rate. They require more hospital admissions, readmissions emergency admissions and longer lengths of stays than their peers, which has received scant research attention in the past. This demonstrates the importance of statutory planning as well as informal support to families to avoid added problems in child development and family bonding over and above that brought by the intellectual disabilities associated with Down syndrome.https://bmjopen.bmj.com/content/10/4/e033770.full
spellingShingle Daniel Mackay
Laura Anne Hughes-McCormack
Angela Henderson
Sally-Ann Cooper
J P Pell
Ruth McGowan
Lisa O'Leary
Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study
BMJ Open
title Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study
title_full Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study
title_fullStr Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study
title_full_unstemmed Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study
title_short Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study
title_sort birth incidence deaths and hospitalisations of children and young people with down syndrome 1990 2015 birth cohort study
url https://bmjopen.bmj.com/content/10/4/e033770.full
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