Obstacles encountered in developing an adult congenital heart disease program

More adults than children are now living in the United States with congenital heart disease (CHD). To accommodate the needs of this burgeoning population, there are an increasing number of centers providing care for adults with CHD. We sought to identify pertinent obstacles encountered in the development of a newly established adult CHD program. A survey regarding CHD knowledge, insurance, and cardiovascular counseling was provided to new clinic patients aged ≥18 years. Crosstab correlations were performed to identify relations among categorical variables. Of 145 subjects (54% women; mean age 31 ± 11 years), 84% had at least moderately complex CHD. Household income was <$40,000 for 51% of subjects. There were a significantly greater number of adults, aged 30 to 54 years, with public insurance compared with the national average (p = 0.005). Of 83% of subjects reporting CHD knowledge, 71% correctly identified their defect. Self-reported CHD knowledge correlated positively with higher education (p = 0.019), higher income (p = 0.036), health maintenance organization or preferred provider organization insurance (p = 0.01), and higher level of CHD complexity (p = 0.012); however, none of these factors significantly affected correct identification of one's CHD. In fact, patients with the most complex disease were the least likely to correctly identify their defects. In general, cardiovascular and sexual health screening was lacking. In conclusion, adult patients with CHD require robust ancillary services and special attention to lifelong insurance and counseling. Implementation of a health-care strategy to identify patients' needs can help to overcome socioeconomic obstacles and contribute to the success of the newly established adult CHD program.