Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well-Being 2016-2019

Abstract

Background Disabilities have implications for health, well-being, and health care, yet limited information is available on the percentage of adults with congenital heart defects (CHD) living with disabilities. We evaluated the prevalence of disability and associated characteristics among 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. Methods and Results Prevalence of disability types (hearing, vision, cognition, mobility, self-care, living independently) were compared with similarly aged adults from the general population as estimated by the American Community Survey and standardized to the CH STRONG eligible population to reduce nonresponse bias and confounding. Health-related quality of life (HRQOL) was measured via Patient-Reported Outcomes Measurement Information System Global Health Scale T-scores standardized to US 18- to 34-year-olds. Separate multivariable regression models assessed associations between disability and HRQOL. Of 1478 participants, 40% reported disabilities, with cognition most prevalent (29%). Of those reporting disability, 45% ever received disability benefits and 46% were unemployed. Prevalence of disability types were 5 to 8 times higher in adults with CHD than the general population. Those with ≥1 disability had greater odds of being female, and of having non-Hispanic Black maternal race and ethnicity, severe CHD, recent cardiac care, and noncardiac congenital anomalies. On average, adults with CHD and cognition, mobility, and self-care disabilities had impaired mental HRQOL and those with any disability type had impaired physical HRQOL. Conclusions Two of 5 adults with CHD may have disabilities, which are associated with impaired HRQOL. These results may inform healthcare needs and services for this growing population.

Keywords: adult; congenital heart defect; disability; health‐related quality of life.

Figure 1. Standardized prevalence of disability among adults with severe and nonsevere CHD in 2016–2019 CH STRONG (Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being) compared with 2017 ACS participants.

CHD estimates were standardized to the CH STRONG eligible sample (n=9312) by site, sex, race and ethnicity, birth year, and CHD severity. ACS estimates were standardized to the same eligible sample by site and sex. More young adults with CHD reported disabilities compared with ACS participants. *All CHD: ACS P<0.05. ^†Severe: nonsevere P<0.05. ACS indicates American Community Survey; and CHD, congenital heart defects.

Figure 2. Standardized physical and mental health‐related quality of life of adults with CHD by disability type: CH STRONG (Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being), 2016–2019.

Physical (A) and mental (B) HRQOL T‐scores were standardized to the CH STRONG eligible sample (n=9312) by site, sex, race and ethnicity, birth year, and CHD severity. Mean T‐scores for physical and mental HRQOL among individuals with CHD and disabilities were lower than reference population values, and those with some disabilities fall below the cutoffs for impaired HRQOL. CHD indicates congenital heart defect; GMH, Global Mental Health; GPH, Global Physical Health; and HRQOL, health‐related quality of life. *Reference mean population scores denoted by letter R. ^†Cutoffs for impaired HRQOL denoted by letter I.