Adolescents with heart disease have complex health needs and require lifelong cardiology follow-up. Interventions to facilitate paediatric to adult healthcare transition are recommended. We sought to determine the educational needs of adolescents and young adults with heart disease and the impact of a transition intervention on improving knowledge and self-management skills among this population.

From September 2014 to May 2015, 115 adolescents and young adults with congenital heart disease or cardiomyopathy (mean age 17±2 years old, 47 girls) were consecutively enrolled. Twenty two have been included in a structured educational program 11 months before (educated group). The 93 others were allocated to usual care (non-educated group). Knowledge in all the patients was assessed using a same questionnaire exploring specific issues related to heart disease. In the non-educated group we observed significant gaps in knowledge: only 61% knew the name of their heart disease, 20% were aware of the recommended follow-up, 43% knew preventive measures of infectious endocarditis, and 8% of the girls were informed on the maternal risk of pregnancy. The mean total knowledge score in the educated group was significantly higher as compared to the non-educated (score=11.7/20±3.5 vs 8.6±3,2 p<0.01). In this group, the best scores concerned knowledge on follow-up, cardiac symptoms, prevention of endocarditis, and pregnancy risk (p<0.01). In multivariate analysis, provision of structured education was the only determinant of higher levels of knowledge (R=0.40, p<0.01) after adjustment for age, sex, heart disease complexity, school level and family status.

Education at transition period has a significant impact on the adolescent knowledge above all those concerning their follow-up and their cardiovascular risk. Structured education program should improve adult understanding of their heart condition, and could prevent potential complications.