Quality of Life of Children Born with a Congenital Heart Defect
Related Experiment Video
Updated: Oct 6, 2025

Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Neil Derridj1, Damien Bonnet2, Johanna Calderon3
1Center of Research in Epidemiology and Statistics, Inserm, INRA, University of Paris, Paris, France; M3C-Pediatric Cardiology, Necker Enfants Malades, AP-HP, University of Paris, Paris, France.
Insights
Children with congenital heart defects (CHD) undergoing palliative repair or later complete repair show reduced quality of life (QoL) by age 8. Early complete repair also impacts QoL, highlighting the importance of intervention timing.
Area of Science:
- Pediatric Cardiology
- Health Services Research
- Quality of Life Studies
Background:
- Congenital heart defects (CHD) are common birth abnormalities requiring medical and surgical management.
- Assessing long-term health-related quality of life (QoL) is crucial for understanding the impact of CHD interventions.
- Identifying specific patient subgroups at risk for QoL impairment is essential for targeted care.
Purpose of the Study:
- To identify subgroups of children with CHD at risk of impaired health-related QoL at age 8.
- To analyze QoL based on different medical and surgical management strategies for CHD.
- To determine the influence of intervention timing on QoL outcomes.
Main Methods:
- Prospective population-based cohort study of 598 patients with CHD.
- Subgroup analysis based on management: outpatient clinic, early repair (<3 years), late repair (>3 years), palliative repair, and spontaneous resolution.
- QoL assessed at age 8 using the Pediatric Quality of Life Inventory (self- and parent-reported); statistical analysis included multivariable regression and Cohen effect size.
Main Results:
- Palliative repair subgroup reported significantly lower QoL (self- and parent-reported) with large effect sizes.
- Late complete repair (>3 years) also showed significantly lower parent-reported QoL with a large effect size.
- Early complete repair (<3 years) demonstrated lower self-reported QoL with a small effect size.
Conclusions:
- Hospital interventions for CHD are associated with reduced QoL at age 8.
- The timing of cardiac intervention, particularly palliative or later complete repair, significantly influences long-term QoL.
- Further research into optimizing intervention timing may improve QoL outcomes for children with CHD.
Objectives:
To identify subgroups with a congenital heart defect (CHD) at risk of health-related quality of life (QoL) impairment at 8 years of age according to their medical and surgical management.
Study Design:
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 3 years, (3) complete repair after age 3 years, (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 8 years. Multivariable regression analysis and Cohen effect size were used to compare outcomes across the CHD groups.
Results:
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 3 years 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 3 years 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).
Conclusions:
The QoL of children with CHD who experienced a hospital intervention is reduced at age 8 years. Patient age at the last cardiac intervention might influence QoL at 8 years.
Related Concept Videos
Cardiomyopathy III: Hypertrophic Cardiomyopathy
Cardiomyopathy V: Interprofessional Care
Mitral Stenosis IV: Nursing Management
Cardiomyopathy II: Dilated Cardiomyopathy
Mitral Stenosis III: Medical Management
Mitral Stenosis I: Introduction

