Comorbidities and Healthcare Utilization Among Young Adults With Congenital Heart Defects by Down Syndrome Status—Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG, 2016–2019

IF 1.6 4区医学 Q4 DEVELOPMENTAL BIOLOGY Birth Defects Research Pub Date : 2025-01-27 DOI:10.1002/bdr2.2439

Vanessa I. Villamil, Karrie F. Downing, Matthew E. Oster, Jennifer G. Andrews, Maureen K. Galindo, Jenil Patel, Scott E. Klewer, Wendy N. Nembhard, Sherry L. Farr

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Abstract

Background

Almost half of individuals born with Down syndrome (DS) have congenital heart defects (CHDs). Yet, little is known about the health and healthcare needs of adults with CHDs and DS. Therefore, we examined comorbidities and healthcare utilization of this population.

Methods

Data were from the 2016–2019 Congenital Heart Survey to Recognize Outcomes, Needs, and well-beinG (CH STRONG), a survey of 19–38-year-olds with CHDs identified through birth defects registries in Arkansas, Arizona, and Atlanta. Outcome estimates were standardized to the CH STRONG eligible population. Multivariable Poisson regression generated adjusted prevalence ratios (aPRs) for associations between DS and each outcome, adjusting for covariates, including CHD severity.

Results

Among 1500 respondents, 9.1% had DS. Compared to those without DS, respondents with DS were more commonly male (55.5% vs. 45.0%), < 25 years old (51.8% vs. 42.7%), non-Hispanic White (72.3% vs. 69.3%), and publicly insured (77.4% vs. 22.8%; all p < 0.05). Of adults with CHDs and DS, 5.5% had cardiac comorbidities, 19.3% had emergency room (ER) visits, 6.2% had hospital admissions, and 1.2% had cost-related delays in care in the last year; 0.1 to 0.6 times lower than adults with CHDs without DS. Additionally, 26.7% had non-cardiac comorbidities (aPR = 1.25 [0.92–1.72]), most commonly sleep apnea (13.7% vs. 3.2%, aPR = 3.67 [2.02–6.67]). Receipt of cardiology care in the last 2 years was similarly low (52.7% vs. 44.7%).

Conclusions

Adults with CHDs and DS comprise a substantial percentage of adults with CHDs and have unique health and healthcare needs. Half of adults with CHDs and DS are not receiving recommended routine cardiac care.

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2016-2019年，通过唐氏综合征状态-先天性心脏调查识别结果、需求和健康的年轻先天性心脏缺陷患者的合并症和医疗保健利用

背景：几乎一半的唐氏综合症（DS）患者患有先天性心脏缺陷（CHDs）。然而，对于患有冠心病和DS的成年人的健康和保健需求知之甚少。因此，我们检查了这一人群的合并症和医疗保健利用情况。方法：数据来自2016-2019年先天性心脏调查，以识别结果、需求和福祉（CH STRONG），这是一项对阿肯色州、亚利桑那州和亚特兰大出生缺陷登记处发现的19-38岁冠心病患者的调查。结果估计标准化为符合CH STRONG条件的人群。多变量泊松回归对包括冠心病严重程度在内的协变量进行了调整，生成了DS与每个结局之间关联的校正患病率比（aPRs）。结果：1500名被调查者中，9.1%患有DS。与没有退行性椎体滑移的人相比，退行性椎体滑移的受访者通常是男性（55.5%比45.0%）。结论：患有冠心病和退行性椎体滑移的成年人占冠心病成年人的很大比例，并且有独特的健康和保健需求。一半患有冠心病和DS的成年人没有接受推荐的常规心脏护理。

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来源期刊

Birth Defects Research Medicine-Embryology

CiteScore

3.60

自引率

9.50%

发文量

153

期刊介绍： The journal Birth Defects Research publishes original research and reviews in areas related to the etiology of adverse developmental and reproductive outcome. In particular the journal is devoted to the publication of original scientific research that contributes to the understanding of the biology of embryonic development and the prenatal causative factors and mechanisms leading to adverse pregnancy outcomes, namely structural and functional birth defects, pregnancy loss, postnatal functional defects in the human population, and to the identification of prenatal factors and biological mechanisms that reduce these risks. Adverse reproductive and developmental outcomes may have genetic, environmental, nutritional or epigenetic causes. Accordingly, the journal Birth Defects Research takes an integrated, multidisciplinary approach in its organization and publication strategy. The journal Birth Defects Research contains separate sections for clinical and molecular teratology, developmental and reproductive toxicology, and reviews in developmental biology to acknowledge and accommodate the integrative nature of research in this field. Each section has a dedicated editor who is a leader in his/her field and who has full editorial authority in his/her area.