Mental Health and Wellbeing research group, Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK.
West of Scotland Regional Genetics Service, Queen Elizabeth University Hospital, Glasgow, UK.
BMJ Open. 2020 Apr 1;10(4):e033770. doi: 10.1136/bmjopen-2019-033770.
To investigate current Down syndrome live birth and death rates, and childhood hospitalisations, compared with peers.
General community.
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.
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.
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%).
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.
调查唐氏综合征活产儿和死亡率以及儿童住院情况，并与同龄人进行比较。
普通社区。
通过苏格兰地区细胞遗传学实验室鉴定的所有唐氏综合征活产儿，1990 年至 2015 年，每个年龄、性别、邻里贫困程度与五个非唐氏综合征对照组相匹配。与苏格兰住院和死亡数据进行记录链接。
使用分层 Cox 比例风险（PH）模型计算唐氏综合征患儿和匹配对照组首次住院（任何和急诊）风险的 HR，并使用条件对数线性回归模型计算住院时间。
确定了 689/1479（46.6%）名女性和 769/1479（51.9%）名男性唐氏综合征儿童/青少年（每 1000 例活产儿中有 1.0 例，无随时间变化的减少）；1235 名进行了匹配。在此期间，92/1235（7.4%）人死亡，是对照组的 18.5 倍。唐氏综合征组中至少有一次入院的人数更多（发病率比（IRR）72.89（68.72-77.32）比 40.51（39.15-41.92）；调整后的 HR=1.84（1.68，2.01））和再次入院（IRR 54.85（51.46-58.46）比 15.06（14.36-15.80）；调整后的 HR=2.56（2.08，3.14））。他们的入院更多是急诊（IRR 56.78（53.13-60.72）比 28.88（27.73-30.07）；第一次急诊入院调整后的 HR=2.87（2.61，3.15））。唐氏综合征患儿的首次入院后，他们的住院时间延长了 28%。唐氏综合征组的入院率从 1990-2003 年到 2004-2014 年增加（从 90.7%到 92.2%），而对照组的入院率则下降（从 63.3%到 44.8%）。
我们提供了唐氏综合征患儿的活产率和儿童死亡率的同期统计数据。与同龄人相比，他们需要更多的住院治疗、再次住院、急诊入院和更长的住院时间，这在过去的研究中很少受到关注。这表明，除了与唐氏综合征相关的智力残疾带来的问题外，法定规划以及对家庭的非正式支持对于避免儿童发育和家庭关系中出现额外问题非常重要。
