Transition readiness in congenital heart disease: Are teens and young adults getting the recommended information?

Abstract

Background: The 2011 American Heart Association best practices statement on transition for young adults with congenital heart disease (CHD) addresses both medical transfer of care and transition to independent adulthood. The statement specifically includes information regarding both medical and lifestyle issues. The aim of this study is to evaluate medical and lifestyle-related areas of knowledge of teens with CHD to help identify targets for potential intervention. Methods: Multicenter cohort study using a validated transition readiness assessment questionnaire, divided into medical, lifestyle and, for females, pregnancy/family planning knowledge. Results were reported as knowledge deficit, or percentage of items that respondents indicated they did not know. Results: 401 patients were included across four U.S. tertiary care centers (median age 18.7 years, range 14–25). Average perceived medical knowledge deficit was 19%, lifestyle knowledge deficit was 19%, and pregnancy/family planning knowledge deficit was 53%. Despite similar combined scores, females outperformed males in medical knowledge (P ​= ​0.03), while males outperformed females in lifestyle knowledge (P ​< ​0.001). Moderate CHD complexity patients scored highest in medical knowledge, while simple CHD scored lowest (P ​= ​0.01), and CHD complexity did not affect lifestyle scores. Taking cardiac medications or having an IEP, had no effect. Conclusion: Teens and young adults with CHD exhibit similar overall knowledge between medical and lifestyle factors, but differences exist between males and females in each subcategory. Efforts to improve patient knowledge are needed, particularly for those with simple and complex CHD, and improving information regarding pregnancy and family planning.

Keywords

• Adult congenital heart disease
• Patient education
• Guidelines
• Health care transition
• Adolescent medicine