Objectives: To assess if the adolescents’ knowledge and understanding of their congenital heart disease (CHD) influence their quality of life.
Methods: A cohort (n=108) of adolescents with CHD was recruited from an ambulatory setting at a tertiary centre and a private service. Patients completed self-report questionnaires, supplemented by clinical information provided by the attending cardiologists. Additional questionnaires included The Paediatric Quality of Life Inventory (HRQoL) 4.0-cardiac model, and a questionnaire assessing adolescents’ knowledge of their cardiac condition.
Results: 108 patients aged from 12 to 20 years were recruited between May 2007 and August 2008. 98% (106/108) of patients were in NYHA class I. Abnormities included minor CHD and generally non-haemodynamically significant residual lesions following surgery for conditions such as TGA, TOF and VSD etc. Two adolescents had had a Fontan procedure. Adolescents generally had a poor understanding of their cardiac conditions; 53% (57/108) had no anatomical knowledge of the structurual abnormalities. 32% (34/108) provided an incorrect anatomical drawing. Only 10 (9%) patients drew reasonably accurate anatomical diagrams of their abnormalities. Of these, 6 completed their questionnaires at home with possible assistance. A greater knowledge and understanding of the cardiac abnormality correlated with increasing age (Pearson correlation, r=.19, P<0.05) and improved health related quality of life (HRQoL; r=.23, P<0.05). Correlation of severity of CHD and HRQoL was non-significant.
Conclusions: Adolescents’ cardiac knowledge and understanding of their cardiac abnormalities have a positive influence on HRQoL in adolescents with CHD. This influence is of greater significance than the severity of their abnormality.