Health-related quality of life (HRQL) is an important outcome measure in pediatrics. We aimed to determine HRQL of children who underwent complex cardiac surgery at age ≤6 weeks with follow-up at age 4-5 years.

We prospectively followed an inception cohort of children after complex cardiac surgery (CCS) performed at age ≤6 weeks at Stollery Children’s Hospital between 2000 and 2014. At the 4- to 5-year follow-up visit, parents completed the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL). Scores were compared with a normative healthy population and with children with chronic illness of a similar age. Predictors of PedsQL scores were determined using univariate and multiple linear regressions, with P ≤ 0.05 considered statistically significant.

Of 712 children who underwent CCS at ≤6 weeks of life, 119 (16.7%) died and 140 did not complete the HRQL questionnaire (for multiple reasons), leaving 453 of 593 (76.4%) survivors included. At 4- to 5-year follow-up, the PedsQL total score (mean: 79.5, standard deviation [SD]: 16.3) was significantly lower than that in the healthy normative population (mean: 87.4, SD: 12.7) and similar to that in children with chronic illness (mean: 76.0, SD: 19.3). Patients after single ventricle palliation had a significantly lower PedsQL total score (mean: 72.8, SD: 17.1) than that in patients after biventricular repairs (mean: 82.4, SD: 15.1). Independent risk factors for lower PedsQL scores consistently included single ventricle palliation, chromosomal abnormality, extracorporeal membrane oxygenation, and the number of noncardiac hospitalizations.

The HRQL of children who underwent CCS in early infancy is lower than that of healthy children but similar to that of children with other chronic illnesses.