Health-Related Quality of Life in Children 4-5 Years After Open Heart Surgery in Early Infancy

Background: 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. Methods: ≤ 0.05 considered statistically significant. Results: 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. Conclusion: 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.