Psychosocial profile of adults with complex congenital heart disease

Despite the increasing number of adults with congenital heart disease (CHD), little is known of the emotional life of these long-term survivors; hence, we undertook a study to establish a psychological profile of these individuals so as to optimize their care.

We performed psychiatric evaluation by both interview and questionnaire on 29 ambulatory patients with CHD (mean age, 38 years; range, 26-56 years).

Although many met symptomatic criteria for psychiatric diagnosis, most were functional in day-to-day life and used denial in adapting to their CHD. In childhood, extended absences from school, cyanosis, scars, and sports restrictions hindered friendships and conflicted with a sense of "normalcy"; teasing and low self-esteem were more notable in boys; girls more readily hid behind makeup, nail polish, and clothing. In adulthood most were concerned about shortened life expectancy, disability, and childbearing and child rearing. Virtually all were highly committed to both school and work performance. All but those with complete, uncomplicated early repair expressed unresolved frustration, anger, and fears of a future that might include further medical complications.

Listening to this selected group of patients offers insight that may be helpful to the clinical care of patients with CHD and other patients with lifelong disease.