Disability among young adults with congenital heart defects: Congenital heart survey to recognize outcomes, needs, and well‐being 2016–2019

Journal of the American Heart AssociationDowning KF, Oster ME, Klewer SE, et al. | October 25, 2021


Disabilities may be experienced by two of 5 adults suffering from congenital heart defects (CHD), and presence of disabilities results in impaired health‐related quality of life (HRQOL) in such patients.

  • Analysis of the 2016–2019 CH STRONG (Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being) population‐based sample of 19‐ to 38‐year‐olds with CHD from 3 US locations.

  • Among participants (n=1,478), disabilities were experienced by 40%, and most prevalent (29%) was cognition.

  • A 5 to 8 times higher prevalence of disability types was reported in adults with CHD vs the general population.

  • Greater odds of being female, and of having non‐Hispanic Black maternal race and ethnicity, severe CHD, recent cardiac care, and noncardiac congenital anomalies were present in those with ≥1 disability.

  • Impaired mental HRQOL was evident, on average, in adults with CHD and cognition, mobility, and self‐care disabilities, and impaired physical HRQOL was seen in those with any disability type.

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