Quality of Life of Children Born with a Congenital Heart Defect

Abstract

To identify subgroups with a congenital heart defect (CHD) at risk of health-related quality of life (QoL) impairment at 8years of age according to their medical and surgical management. From a prospective population-based cohort study, 598 patients with CHD were subdivided according to their medical and surgical management: (1) CHD followed-up in an outpatient clinic, (2) complete repair before age 3years, (3) complete repair after age 3years, (4) palliative repair, or (5) CHD with spontaneous resolution (reference subgroup). Self-reported QoL and parent-reported QoL were measured using the Pediatric Quality of Life Inventory version 4.0 (score range, 0-100) at age 8years. Multivariable regression analysis and Cohen effect size were used to compare outcomes across the CHD groups. Self-reported and parent-reported QoL scores for the palliative repair subgroup were lower (β=-2.1 [95% CI, -3.9 to -0.2] and β=-16.0 [95% CI, -22.4 to -9.5], respectively), with a large effect size (δ=-0.9 [95% CI, -1.4 to -0.4] and δ=-1.3 [95% CI, -1.8 to -0.7], respectively). Parent-reported QoL scores for the complete repair after age 3years subgroup were lower (β=-9.2; 95% CI, -15.0 to -3.5), with a large effect size (δ=-0.9; 95% CI, -1.4 to -0.5). Self-reported QoL scores for the complete repair before age 3years subgroup was lower (β=-1.3; 95% CI, -1.9 to -0.6), with a small effect size (δ=-0.4; 95% CI, -0.6 to -0.2). The QoL of children with CHD who experienced a hospital intervention is reduced at age 8years. Patient age at the last cardiac intervention might influence QoL at 8years.