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.

Details

• Alternative Title:
  Birth Defects Research, 2025, v. 117, no. 2: 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.
• Journal Article:
  Birth Defects Research
• Personal Author:
  Villamil, Vanessa I. ; Downing, Karrie F. ; Oster, Matthew E. ; Andrews, Jennifer G. ; Galindo, Maureen K. ; Patel, Jenil ; Klewer, Scott E. ; Nembhard, Wendy N. ; Farr, Sherry L.
• Description:
  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.
  
  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.
  
  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%).
  
  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.
• Content Notes:
  Author manuscript
• Subjects:
  • Humans
  • Down Syndrome
  • Heart Defects, Congenital
  • Male
  • Female
  • Adult
  • Comorbidity
  • Patient Acceptance of Health Care
  • Young Adult
  • Surveys and Questionnaires
  More +
• Keywords:
  • cardiology
  • congenital heart defects
  • Down syndrome
  • healthcare utilization
• Source:
  Birth Defects Research, 2025, v. 117, no. 2
• DOI:
  https://doi.org/10.1002/bdr2.2439
• ISSN:
  2472-1727
• Pubmed ID:
  39868765
• Pubmed Central ID:
  PMC11837948
• Document Type:
  Text
• Funding:
  CC999999/ImCDC/Intramural CDC HHSUnited States/ ; CC/CDC HHSUnited States/
• Genre:
  Journal Article
• Place as Subject:
  Arkansas ; Arizona
• Pages in Document:
  e2439 (14 pdf pages)
• Volume:
  117
• Issue:
  2
• Download URL:
  https://stacks.cdc.gov/view/cdc/261733/cdc_261733_DS1.pdf
• File Type:
  [PDF - 276.33 KB]
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha-512:0d3ff5172818f0454d9c11580e218fdf153d204591508774098e3a363cf6e70b5c71f629aafd637d3421b72841e4c79f189ba6aeba36ccffdce5646febb68730