Cardiovascular
Comorbidities and healthcare utilization among young adults with congenital heart defects by Down syndrome status – Congenital Heart Survey to Recognize Outcomes, Needs, and wellbeinG (CH STRONG), 2016-2019 Vanessa Villamil* Vanessa Villamil Karrie F Downing Jennifer G Andrews Matthew E Oster Maureen Galindo Jenil Patel Wendy N. Nembhard Sherry L Farr
Background: About 50% of live births with Down syndrome (DS) have congenital heart defects (CHD). Yet little is known about the health and healthcare needs of adults with DS and CHD. Our aim was to examine comorbidities and healthcare utilization of adults with DS and CHD.
Methods: From 2016-2019, the Congenital Heart Survey to Recognize Outcomes, Needs, and well-beinG (CH STRONG) surveyed adults with CHD, ages 19-38 years, or a proxy (e.g. parent), identified from active birth defects registries in Arkansas, Arizona, and Atlanta. Multivariable Poisson regression generated adjusted prevalence ratios (aPR) and 95% confidence intervals for associations between DS and comorbidities and healthcare utilization, adjusting for covariates; prevalence estimates for these associations were standardized to the 9,312 CH STRONG eligible individuals by site, sex, race/ethnicity, birth year, and CHD severity.
Results: Among 1,500 respondents, 9.1% had DS. Compared to adults with CHD without DS, adults with CHD and DS were more likely to be male (55.5% vs 45.0%), <25 years old (51.8% vs 42.7%), non-Hispanic white (72.3% vs 69.3%), and have public insurance (77.4% vs 22.8%) (all p<0.05), but less likely to report cardiac comorbidities (5.5% vs 14.2%; aPR=0.27 [0.12-0.58]), emergency room (ER) visits (19.3% vs 32.5%, aPR=0.57 [0.40-0.83]), hospitalizations (6.2% vs 13.2%; aPR=0.56 [0.32-0.99]), cardiac-related hospitalizations (0.7% vs 5.3%; aPR=0.16 [0.04-0.67]), and delays in care due to cost (1.2% vs 19.6%; aPR=0.14 [0.04-0.43]) in the last year. Adults with CHD and DS compared to those without DS had no detectable differences in severe CHD (38.7% vs 33.8%; p=0.25) or receiving cardiology care in the last 2 years (52.6% vs 44.7%; aPR=1.05 [0.82-1.36]).
Conclusions: Adults with DS and CHD may have better access to care, resulting in fewer cardiac comorbidities and use of ER and inpatient care. However, all adults with CHDs may benefit from improvements in receipt of cardiology care.