The purpose of this study was to investigate parent reports of quality of life for their very young children with congenital heart defects (CHD) and to compare their scores to previously published data. Parents of children 1–3 years old with CHD or innocent heart murmurs completed the Pediatric Quality of Life Inventory (PedsQL) core, cardiac, and family impact modules. Multivariable regression analyses assessed the impact of age, sex, family income, and CHD treatment history (study group) on PedsQL scores. Correlations between family impact and core/cardiac modules were examined. PedsQL scores were compared to healthy norms. 140 parents of young children participated within four study groups: CHD no treatment (n = 44), CHD treatment without bypass (n = 26), CHD treatment with bypass (n = 42) ,and innocent heart murmurs (n = 28). Male sex was associated with higher core (F = 4.16, p = 0.04, σ2 = .03) and cardiac quality of life (F = 4.41, p = .04, σ2 = 0.04). Higher family income was associated with higher family quality of life (F = 8.89, p < .01, σ2 = 0.13). Parents of children with innocent heart murmurs and children with CHD not requiring treatment had higher core quality of life compared to young healthy children. Cardiac-related quality of life scores were associated with family impact (r = 0.68) and core module (r = 0.63) quality of life scores. Parents of very young children with CHD report good quality of life for their children and families. Quality of life exceeds in children with innocent murmurs or CHD not requiring repair. Parents report a lower quality of life among girls, and lower family quality of life is associated with lower family income.
Senior Scientist, CHEO Research Institute