Congenital heart defects (CHD) are the most common structural birth defect and occur in approximately 1% of all live births (Reller et al. 2008). More than 80% of children born with CHD are expected to live to adulthood (Downing et al. 2023; Mandalenakis et al. 2017; Moons et al. 2010; Wauthy et al. 2011). As these children with CHD age, their parents express concerns regarding their children’s future, including their education and employment opportunities in adulthood (Delaney et al. 2021). Researchers have estimated that, since 2010, there are more adults than children living with CHD in the United States (US) (Gilboa et al. 2016). Given the advancements in CHD care, they expect this gap will continue to grow as children age into adulthood and adults with CHD continue to live longer.

Adverse neurodevelopmental outcomes are common among children with CHD (Marino et al. 2012). Cognitive impairment and motor limitations can negatively impact their learning and concentration, communication, and gross and fine motor skills (Farr et al. 2018; Oster et al. 2017; Snookes et al. 2010), which may compromise future educational and employment outcomes. While a few studies have shown academic performance is worse in children with CHD compared to those without CHD (Bellinger et al. 2015; Lawley et al. 2019; Mulkey et al. 2016; Oster et al. 2017; Schaefer et al. 2016; Wotherspoon et al. 2020), similar studies of educational attainment in adults with CHD outside of the United States have had mixed results. These results have ranged from findings of lower educational attainment (Gong et al. 2020; Karsenty et al. 2015), to no difference (Bygstad et al. 2012; Raissadati et al. 2020; Schaefer et al. 2016; Vigl et al. 2011), to higher educational attainment among adults with CHD (Nieminen et al. 2003).

As in the general population, educational attainment is a predictor of employment status for adults with CHD (Sluman et al. 2019). However, similar to education, results from studies on employment among adults with CHD outside the Unites States are mixed, showing lower employment rates (Geyer et al. 2009), no difference (Kokkonen and Paavilainen 1992), or higher rates (Crossland et al. 2005) compared to adults without CHD. Among those with CHD, some studies have also found that employment rates decrease with increasing CHD severity (Crossland et al. 2005; Kamphuis et al. 2002).

Data are limited on education and employment outcomes of adults with CHD within the Unites States, though both are important contributors to quality of life and independence (Apers et al. 2016; Girouard and Kovacs 2020). Therefore, using population-based Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) data, we aimed to characterize educational attainment and employment history of young adults (19–38 years) with CHD in Arizona (AZ), Arkansas (AR), and metropolitan Atlanta, Georgia (GA) and to compare educational and employment outcomes across demographic and CHD-related characteristics.

Of 1656 CH STRONG survey respondents, 176 (10.6%) were excluded for having genetic syndromes, including Down syndrome. Of the remaining 1480, 42 (2.8%) were excluded for missing data on the education and work outcomes (n = 35) or race (n = 7). In total, 1438 CH STRONG respondents with no underlying comorbid genetic syndromes and complete responses to education and employment history questions were included in the analyses; of those, 486 (33.8%) had severe CHD and 952 (66.2%) had nonsevere CHD (Table 1). There was a higher proportion of males among those with severe CHD (54.5%) and a higher proportion of females among those with non-severe CHD (59.2%) (p < 0.0001). The distribution of self-reported race/ethnicity also differed by CHD severity (p = 0.04; e.g., 12.1% with severe CHD were Hispanic whereas 8.4% with nonsevere CHD were Hispanic) as did the site of birth (p < 0.0001; of those with severe CHD, 22.8% were born in AZ and 44.7% were born in AR).

Figure 1 presents standardized percentages and 95% CIs of educational attainment and employment history overall and by CHD severity. Educational attainment and employment outcomes by CHD severity were similar. The aPR assessing education attainment beyond high school by CHD severity was 1.00 (95% CI: 0.93–1.07), and the most common level of attainment for both severity groups was “some college education, no degree” (37.4% among severe CHD and 37.0% among non-severe CHD). Overall, more than a quarter (26.2% among severe CHD, 28.8% among nonsevere CHD) of the 19–38-year-olds with CHD in CH STRONG attained a bachelor’s degree or higher. For employment history, 45.6% with severe CHD and 56.0% with non-severe CHD were employed full-time (aPR = 0.97, 95% CI: 0.91–1.02), and 27.8% and 23.1% worked part-time (aPR = 1.02, 95% CI: 0.92–1.14) during the 12 months before the survey. Additionally, 26.6% with severe CHD and 20.9% with non-severe CHD were unemployed during the 12 months before the survey. Table S2 presents demographics and outcomes by CH STRONG site of birth, with observed differences across all sites for all variables (all p < 0.05) except employment history (p = 0.06). Figure S1 highlights attainment of education beyond high school (Panel A) and full or part-time employment history (Panel B) by primary CHD diagnosis (for CHD types with > 25 observations). Figure S2 highlights attainment of education beyond high school (Panel A) and full or part-time employment history (Panel B) among the older age groups (i.e., CH STRONG participants ages 25–38); in this supplemental analysis, the most common level of attainment was bachelor’s degree or higher (38.6% overall, 40.5% among severe CHD, 38.2% among nonsevere CHD).

Figure 2 presents standardized percentages and 95% CIs of participation in special education among young adults with any CHD, severe CHD, and nonsevere CHD that occurred between kindergarten and 12th grade. Overall, 25.3% of adults with CHD had ever participated in a special education program during grade school, and 14.9% participated in special education during all three grade categories (i.e., kindergartern–3rd grade, 4th–6th grade, 7th–12th grade). Participation in special education differed by CHD severity; adults with severe CHD (32.9%) were more likely to participate in special education between kindergarten and 12th grade, compared to those with nonsevere CHD (23.5%) (p = 0.01). More specifically, differences by severity were observed between 4th and 6th grade (p=0.02) and 7th–12th grade (p = 0.01).

Table 2 presents percentages and aPRs for educational attainment and employment history outcomes by characteristics. Education and employment increased with increasing age, such that percentages with more than a high school education ranged from 62.8% among 19–24-year-olds to 75.0% among 31–38-year-olds, and percentages with full-time employment ranged from 41.9% to 66.9%. Compared with males, females were more likely to attain more than a high school education (aPR = 1.11, 95% CI: 1.04–1.19). Compared with non-Hispanic White respondents, fewer non-Hispanic Black (aPR = 0.80, 95% CI: 0.71–0.90) and Hispanic (aPR = 0.83, 95% CI: 0.71–0.97) respondents attained more than a high school education. Compared with individuals born in Metro Atlanta, those born in Arizona and Arkansas were less likely to have more than a high school education (AZ aPR = 0.84, 95% CI: 0.77–0.92; AR aPR = 0.86, 95% CI: 0.79–0.92). For employment history, compared with no employment, participants 31–38 years were less likely to be employed part-time only (aPR = 0.79, 95% CI: 0.66–0.94). Compared with those with at least a bachelor’s degree, those with less education were less likely to be employed, either part-time (aPRs increased from 0.57 for < HS to 0.87 for some college) or full-time (aPRs increased from 0.63 for < HS to 0.90 for some college). Females were slightly less likely to have full-time employment compared to males (aPR = 0.94, 95% CI: 0.90–0.99).

Two out of three young adults with CHD had attained education beyond high school, and over three quarters had worked at least part-time in the 12 months prior to completing the survey. We did not observe substantial differences in educational attainment and employment outcomes by CHD severity. It was interesting to note that more than a quarter of young adults with CHD participated in a special education program by 12th grade, and these participation rates differed by CHD severity. A third of those with severe CHD had participated in special education compared with one in four with nonsevere CHD.

In previous literature, children with CHD experienced difficulties with learning and concentration, communication, and gross and fine motor skills that impacted their academic achievement (Farr et al. 2018; Oster et al. 2017; Snookes et al. 2010). For example, children with CHD, compared with children without CHD, perform lower on standardized educational tests and other tests based on questionnaire-administered items and scales (Bellinger et al. 2015; Glinianaia et al. 2021; Lawley et al. 2019; Mulkey et al. 2016; Oster et al. 2017; Schaefer et al. 2016; Wotherspoon et al. 2020). Our study focused on the educational attainment of young adults with CHD, but we found that one in four had participated in special education between kindergarten and 12th grade, and 19%–21% participated in special education across specific grade levels. These percentages from CH STRONG are higher than the reported 11%–14% special education enrollment among all U.S. public school students during the 1990–1991 and 2004–2005 school years, when many CH STRONG respondents would have been of school age (National Center for Education Statistics 2015). Riehle-Colarusso et al. found that children with CHD (and no other syndromes or birth defects) were 50% more likely to receive special education than children without birth defects (Riehle-Colarusso et al. 2015). The special educational needs of those children with CHD fell particularly within the categories of intellectual disability, sensory impairment, significant developmental delay, and specific learning disability services.

In CH STRONG, more than a quarter of the 19–38-year-olds with CHD attained a bachelor’s degree or higher. As a comparison with general population, the American Community Survey estimated educational attainment among 18–34-year-olds in the United States and found that a similar percentage (21%) attained a bachelor’s degree or higher (U.S. Census Bureau 2018a). To further compare educational attainment among those with CHD to those without CHD, a recent systematic review and meta-analysis identified 11 published studies (including one U.S. study, published in 2003 using data on 124 patients of an outpatient cardiology clinic in a Northeastern U.S. city) that specifically examined university education across comparative CHD and non-CHD populations (Cocomello et al. 2021). Across all studies in their analysis, those with CHD were 38% less likely to obtain a university degree compared with those without CHD; however, those authors concluded that the educational attainment of those with CHD could be higher or lower than that of their peers given the sparsity of studies as well as the lack of adjustment for confounders and heterogeneity of included studies. Furthermore, findings from this predominantly European systematic review, given differences in education systems, may be less generalizable to the Unites States.

Unemployment in the prior 12 months among CH STRONG participants aged 19–38 years (22.1%), especially those with severe CHD (26.6%), was also similar to unemployment among the 16–64-year-old general population (26%) based on American Community Survey estimates (U.S. Census Bureau 2018b). In previous literature, one study on employment of CHD patients in 6 cardiology clinics across the Unites States similarly found that about 30% were unemployed (including unemployment due to disability, homemaking, or academic study) (Sluman et al. 2019). Additionally, several European studies have explored employment among adults with CHD. Geyer and colleagues observed that full-time employment rates were lower among German males (but not female) adults with CHD than those without CHD, and rates decreased as CHD severity increased (Geyer et al. 2009). A study in the Netherlands also found that employment rates were lower as the severity of CHD increased (Kamphuis et al. 2002). Conversely, a Finnish study found no difference in employment rates between matched CHD and non-CHD populations (Kokkonen and Paavilainen 1992). Further, a matched CHD and non-CHD cohort study from the United Kingdom found that those with CHD had significantly higher rates of unemployment, regardless of severity (Crossland et al. 2005). However, employment rates can vary by country and over time, so results from non-U.S. studies may not be comparable to a U.S.-based population.

As previously observed among the CHD population and the general population (National Center for Education Statistics 2020; Sluman et al. 2019), we found that educational attainment was a predictor of employment status for adults with CHD. Compared with those with at least a bachelor’s degree, those in CH STRONG with less than a high school diploma were the least likely to report part-time and full-time employment, followed by those with a high school diploma and those with some college education. Also reflective of the general population (U.S. Census Bureau 2018a, 2018b), site was associated with education in CH STRONG, such that individuals from Arizona and Arkansas had lower educational attainment compared with metro Atlanta, and sex was associated with employment, such that females were slightly less likely to be employed full-time compared with males.

Educational attainment and the ability to obtain and maintain employment contribute to quality of life and independence for adults living with CHD (Apers et al. 2016; Girouard and Kovacs 2020). Further, unemployment among adults with CHD has been associated with worse self-reported health, more symptoms of depression and anxiety, and more health-risk behaviors (Moons et al. 2018). Kovacs and Bellinger have suggested clinical strategies to optimize the educational achievement and employment of adults with CHD (Kovacs and Bellinger 2020), especially those with cognitive disabilities who constitute more than a quarter of all adults with CHD (Downing et al. 2021). Strategies that healthcare providers can implement include supporting their patients’ academic and employment pursuits commensurate with neurocognitive abilities/strengths, advocating for appropriate accommodations in academic and employment settings, and encouraging the use of available academic resources and community employment services. Before patients reach adulthood, guidelines from the American Heart Association suggest that pediatric patients with CHD be screened to identify those at high risk for neurodevelopmental concerns and referred for formal evaluation and early intervention if high risk (Marino et al. 2012; Sood et al. 2024). Additionally, vocational planning early in adolescence may be beneficial so that appropriate educational options can be pursued before entering the workforce (Kamphuis et al. 2002; Marino et al. 2012).

In addition to healthcare providers’ individual efforts, Chowdhury et al. published a 2020 Call to Action describing the need for legislation that supports collaboration between health and school systems and bolsters access to high-quality coordinated care and early intervention for people with CHD, such that concerns can be identified and interventions implemented early, but also so that realistic expectations for education and career goals can be set (Chowdhury et al. 2021).