Congenital heart disease: Education and employment considerations and outcomes
Heather S. Girouard, Adrienne H. Kovacs
Abstract
Within the congenital heart disease (CHD) community, the definition of successful outcomes extends beyond morbidity and mortality and includes living as independent and full lives as possible. This includes considerations pertaining to education and employment, which are associated with quality of life and other patient-reported outcomes. As a group, individuals with CHD are more likely to have neurodevelopmental deficits and take part in special education classes and are less likely to complete higher education. Further, they often face health-related job difficulties and are less likely to be employed. People with complex forms of CHD are most likely to experience education and career challenges. This review (i) summarizes current knowledge about educational experiences and attainment, (ii) describes common employment challenges and outcomes, and (iii) offers strategies for various stakeholders. Optimization of educational and employment outcomes often benefits from collaborative efforts among pediatric and adult providers, patients, families, and educators. All strategies must be individually tailored to the neurodevelopmental strengths and weaknesses of each patient; outcomes vary between individuals with significant neurodevelopmental deficits and those with above average skills, abilities, and opportunities. We must also avoid making assumptions and placing artificial limits on academic and career aspirations. The collective objective is to support people born with CHD to achieve quality of life and autonomy goals that are most meaningful for them.