Educational needs of adolescents with congenital heart disease: Impact of a transition intervention programme.

BACKGROUND: Adolescents and young adults with congenital heart disease (CHD) have complex health needs and require lifelong follow-up. Interventions to facilitate the paediatric-to-adult healthcare transition are recommended, but outcomes remain largely under-investigated.

AIMS: To identify the educational needs and the impact of a transition intervention on knowledge and self-management skills in adolescents and young adults with CHD.

METHODS: From September 2014 to May 2015, 115 adolescents and young adults with CHD (mean age 17±2 years; 47 girls) were consecutively enrolled. Among these, 22 had participated in a structured educational programme in the previous 11±4 months (education group) and 93 had not (comparison group). Knowledge about their health status was assessed using a targeted CHD questionnaire.

RESULTS: The mean overall health knowledge score (maximum of 20) in the education group was significantly higher than in the comparison group (11.7±3.5 vs. 8.6±3.2; P<0.001). We observed significant gaps in knowledge in the comparison group: e.g. 61.3% vs. 90.0% knew their condition name (P=0.01), 21.5% vs. 63.6% were aware of recommended follow-up (P=0.004), and 12.8% vs. 75.0% of girls knew to check their heart condition before pregnancy (P<0.01). In multivariable analysis, after adjustment for age, structured CHD education and higher academic attainment were significant determinants of health-related knowledge (P<0.01).

CONCLUSION: Education during adolescent-to-adult transition has a significant impact on health knowledge. Structured CHD educational programmes could improve understanding and prevent potential future complications.