Aprigio Joissy, de Castro Carolina M L, Lima Marcelo A Costa, Ribeiro Márcia G, Orioli Iêda M, Amorim Márcia R
INAGEMP, Departamento de Genética, Instituto de Biologia, UFRJ, Rio de Janeiro, RJ, Brazil.
Laboratório de Genética Humana, Departamento de Biologia Geral, Instituto de Biologia, Universidade Federal Fluminense, Niterói, RJ, Brazil.
J Community Genet. 2023 Apr;14(2):189-195. doi: 10.1007/s12687-022-00627-7. Epub 2022 Dec 23.
Down syndrome is the main genetic cause of intellectual disability. Many studies describe the clinical characteristics of DS patients; however, few have investigated the clinical profile of mothers who have children with DS. Advanced maternal age (≥ 35 years old) is a risk factor for DS. Although there is an overall increase in pregnancies among women with advanced maternal age, there is still a lack of awareness of the increased risk of aneuploidy. Here, we reported the clinical and epidemiological profile of DS children and their mothers in a public reference hospital in the State of Rio de Janeiro, Brazil. For data collection, we performed a face-to-face interview guided by a structured questionnaire with closed-ended questions. A total of 344 individuals, 172 mothers and their DS children, were included in this study. Our results show that 56% of the mothers sampled were ≥ 35 years of age at childbirth. Although 98% of them received prenatal care, only 4% obtained a prenatal diagnosis of DS. Most mothers reported not drinking alcohol or smoking cigarettes during pregnancy. Furthermore, 91% of women took prenatal vitamins and supplements; however, 47% were not aware of their benefits for a healthy pregnancy. Given the strict correlation between advanced maternal age and DS, prenatal care should include genetic counseling for women over 35 years of age. This study highlights the importance of prenatal care and the urgent need for better DS screening allowing for immediate postnatal care, positively impacting the life expectancy of these patients.
唐氏综合征是智力残疾的主要遗传原因。许多研究描述了唐氏综合征患者的临床特征;然而,很少有研究调查生育唐氏综合征患儿的母亲的临床情况。高龄产妇(≥35岁)是唐氏综合征的一个风险因素。尽管高龄产妇的妊娠总数有所增加,但她们对非整倍体风险增加仍缺乏认识。在此,我们报告了巴西里约热内卢州一家公共参考医院中唐氏综合征患儿及其母亲的临床和流行病学情况。为收集数据,我们在一份包含封闭式问题的结构化问卷引导下进行了面对面访谈。本研究共纳入344名个体,即172名母亲及其唐氏综合征患儿。我们的结果显示,抽样母亲中有56%在分娩时年龄≥35岁。尽管其中98%的母亲接受了产前护理,但只有4%的母亲获得了唐氏综合征的产前诊断。大多数母亲报告在孕期不饮酒或吸烟。此外,91%的女性服用了产前维生素和补充剂;然而,47%的女性并不知晓它们对健康妊娠的益处。鉴于高龄产妇与唐氏综合征之间存在紧密关联,产前护理应包括为35岁以上女性提供遗传咨询。本研究强调了产前护理的重要性以及迫切需要更好的唐氏综合征筛查以便能立即进行产后护理,这对这些患者的预期寿命会产生积极影响。