Two of five adults with congenital heart defects (CHD) may have a disability, according to new data published in the Journal of the American Heart Association. Cognitive disabilities appear to be the most common among this patient population.
Researchers noted that there is a dearth of information on the relationship between adults with CHD and disabilities. Addressing that issue, they evaluated data from the CDC-funded CH STRONG survey that examined longer‐term outcomes of adults born between 1980 and 1997 who were diagnosed with CHD in early childhood.
The authors found that disabilities were five to eight times more common in young adults with CHD compared with young adults in the general population, even after excluding people with noncardiac congenital anomalies.
Meanwhile, in adults with CHD, disabilities were more prevalent among those who had been born to Black mothers and as well as those with severe CHD.
In the adult cohort with CHD, health‐related quality of life was impaired for those with disabilities, and almost half of that group reported not working in the past 12 months.
The most common primary CHD types observed in the analytic sample were ventricular septal defects (28%), atrial septal defects (11%), and tetralogy of Fallot (7%).
Of 1,478 patients, 40% reported disabilities, with cognition being the most prevalent (29%).
In addition, among those patients reporting a disability, 45% said they have received disability benefits and 46% were unemployed.
Patients with more than one one disability were more likely to be women and be born to Black mothers. They were also more likely to have severe CHD and noncardiac congenital anomalies.
In general, adults with CHD and cognition, mobility, and self‐care disabilities had impaired mental health‐related quality of life (HRQOL), while those with any disability type had impaired physical HRQOL.
“To our knowledge, this analysis is the first to show an association between disability and non‐Hispanic Black maternal race and ethnicity among adults with CHD," wrote lead author Karrie F. Downing, MPH, with the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, and colleagues. “In our analysis, those with disabilities had worse HRQOL compared with the U.S. general population, whereas those without disabilities had better physical and mental HRQOL.”
Downing et al. also noted that policymakers can do a lot to improve care for these individuals.
"Implementing policies and practices to recognize and support those with disability within the general CHD community may lead to better connection and usage of resources and, ultimately, improved health and well‐being," they wrote.
Read the full study here.