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Updated: Feb 12, 2026
Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Quality of life in young people with congenital heart disease is better than expected
Barbara Reiner1,2, Renate Oberhoffer1,2, Peter Ewert1
1Department of Pediatric Cardiology and Congenital Heart Disease, Deutsches Herzzentrum München, Technische Universität München, Munich, Germany.
Insights
Children with congenital heart disease (CHD) report health-related quality of life (HRQoL) scores equal to or higher than their healthy peers. These findings apply across all disease severities and diagnostic subgroups, indicating effective coping mechanisms.
Area of Science:
- Pediatrics
- Cardiology
- Psychology
Background:
- Improved treatments for congenital heart disease (CHD) have increased focus on long-term functional outcomes, particularly health-related quality of life (HRQoL).
- Existing research on HRQoL in pediatric CHD populations presents conflicting results, necessitating further investigation.
- Understanding HRQoL is crucial for comprehensive patient care and management strategies in CHD.
Purpose of the Study:
- To compare the HRQoL of children with CHD to that of their healthy peers.
- To analyze HRQoL in CHD patients stratified by disease severity and diagnostic subgroups.
- To identify potential differences in HRQoL perception based on age and sex in individuals with CHD.
Main Methods:
- A cohort of 514 children (aged 7-17) with CHD was assessed using the age-adapted KINDL questionnaire for HRQoL.
- Data were compared against a control group of 734 healthy children.
- Statistical analyses included comparisons between CHD patients and controls, with stratification by sex, age, disease severity, and diagnostic subgroups.
Main Results:
- Patients with CHD reported HRQoL scores equal to or higher than healthy peers (CHD: 78.6±9.8 vs. healthy: 75.6±10.1, P<0.001).
- After adjusting for sex and age, CHD patients showed a significantly higher HRQoL (2.3 points, P<0.001).
- Adolescent boys with CHD and both childhood and adolescent girls with CHD reported significantly higher HRQoL than their healthy counterparts, with no differences observed across severity or diagnostic subgroups.
Conclusions:
- Young patients with CHD demonstrate robust coping abilities, reflected in high HRQoL scores comparable to or exceeding those of healthy peers.
- The positive HRQoL perception is consistent across all levels of CHD severity and various diagnostic classifications.
- These findings underscore the resilience of children with CHD and their capacity to manage their condition effectively.
Objectives:
Improved treatments for patients with congenital heart disease (CHD) have led to a growing interest in long-term functional outcomes such as health-related quality of life (HRQoL). Studies on HRQoL in children with CHD have contradicting results. Therefore, we compared HRQoL of children with CHD with that of current healthy peers and stratify CHD cases by severity and diagnostic subgroups.
Methods:
We included 514 patients (191 girls) aged 7-17 (12.9±3.1) years who were recruited at our institution between July 2014 and May 2017. The self-reported and age-adapted KINDL questionnaire was used to assess HRQoL. Patient data were compared with that of a recent control group of 734 healthy children (346 girls, 13.4±2.1 years).
Results:
Patients with CHD scored at least as high as healthy peers in HRQoL (CHD: 78.6±9.8; healthy: 75.6±10.1; P<0.001). After correction for sex and age, patients with CHD presented a 2.3-point higher HRQoL (P<0.001). The sex-specific and age-specific analyses showed that there were no differences between boys with and without CHD in childhood (P=0.255), but in adolescence, boys with CHD had on average 3.9-point higher scores (P=0.001), whereas girls with CHD had statistically higher HRQoL perception than healthy girls in childhood (4.2 points; P=0.003) and adolescence (4.2 points; P=0.005). There were no differences between the severity classes or diagnostic subgroups in the total HRQoL score or in the six subdomains.
Conclusion:
The high HRQoL in young patients with CHD suggests that they can cope well with their disease burden. This holds true for all severity classes and diagnostic subgroups.
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