Executive function and maladaptive coping in a young adult cohort of individuals with congenital heart disease

Background Young adults with congenital heart disease (CHD) are more likely to exhibit executive dysfunction and maladaptive coping yet are less likely to get diagnosed than the general population for psychiatric disorders. The etiology of psychiatric diagnosis is inconclusive amongst CHD populations, and more research is needed to evaluate risk factors contributing to psychiatric disorders including executive function, coping mechanisms, anxiety, depression, fatigue and sleep disorders, parental style/involvement, and sense of coherence. Objectives The study proposed to demonstrate the presence of risk for psychiatric diagnoses amongst young adults with CHD and evaluate factors contributing to mental health and executive dysfunction comorbidities. Methods We used a mixed methods study of quantitative scales and a guided interview on a cohort on 11 young adults (18–24) with CHD who are considered in the American Heart Association high-risk group for developmental disorders or disabilities. We assessed for risk of anxiety and depression, maladaptive and disengagement coping, executive dysfunction and other factors associated with mental health using the Reponses to Stress (RSQ), Patient Reported Outcomes Measurement Information System (PROMIS) and the Amsterdam Executive Function Inventory (AEFI) scales. Qualitative interviews focused on experiences living with CHD, social and family support and executive functioning skills. Results Our mean participant age was 20 years and 36 % had some college education. PROMIS scoring showed increased risk for poor physical function (mean r = 31.8), anxiety (mean r = 64.9), depression (mean r = 66.8), and pain interference (mean r = 66.6). AEFI results also showed poor executive functioning skills, particularly in Self-Control/Self-Monitoring (mean 18.1) and Planning and Initiative (mean 5.3). 27 % of participants had medical record documentation of depression. Interviews showed participants overinflated sense of coherence and poor executive functioning leading to two main themes 1) perceptions of their disability, including denial of their CHD diagnosis and disengagement with mental health needs and 2) challenges in transition care. Conclusions Our study indicates a need for larger scale interventions for psychological young adults with CHD as part of the transition process to adult care.