Need for Routine Screening of Health-Related Quality of Life in Families of Young Children with Complex Congenital Heart Disease

Objectives To assess health-related quality of life (HRQOL) in families of young children with complex congenital heart disease (CHD), and identify the demographic, clinical, and psychosocial factors that place these children and their mothers at greater risk of vulnerability. Study design This cross-sectional study took place from June 2015 to October 2016 at The Sydney Children's Hospitals Network Cardiac Service, Australia. Mothers of a child aged 1-5 years with either single ventricle CHD or CHD requiring neonatal biventricular repair were invited to participate. Eighty-seven mothers completed a suite of validated measures, including the Pediatric Quality of Life Inventory, which assessed the outcomes of child and maternal HRQOL. Results Sixty percent of children with single ventricle CHD and 25% of children with biventricular repair had total Pediatric Quality of Life Inventory scores within the at-risk range. Lower child HRQOL was strongly associated with single ventricle CHD (beta = -0.38; P <.001), physical comorbidity (beta = -0.32; P =.001), feeding difficulties (beta = -0.26; P =.008), and greater maternal psychological stress (beta = -0.18; P =.045), accounting for 52% of the variance in child HRQOL. Lower maternal HRQOL was strongly associated with poorer family functioning (beta = 0.61; P <.001), greater maternal psychological stress (beta = -0.23; P =.004), child physical comorbidity (beta = -0.17; P =.01), and a 'difficult' child temperament (beta = -0.14; P =.01), accounting for 73% of the variance in maternal HRQOL. Conclusions Lower HRQOL is common in young children with complex CHD, particularly single ventricle CHD. Several predictors of HRQOL are potentially modifiable, offering possible pathways for prevention and early intervention. Routine screening is a necessary first step toward developing models of care to improve HRQOL in this population.