Original ArticleHealth-Related Quality of Life Outcomes in Children and Adolescents with Congenital Heart Disease
Section snippets
Methods
This study was a cross-sectional survey that used patient data originally collected to test the psychometric properties of the Pediatric Cardiac Quality of Life Inventory (PCQLI). The Institutional Review Board of Cincinnati Children's Hospital Medical Center approved this study and granted a waiver of consent based on its retrospective nature.
The PedsQL data used for the CHD group in this study was provided by patients with CHD and their parents to establish construct validity during the PCQLI
Results
PedsQL scores were available for 1138 patient and/or proxy reporters with CHD (Table I). The CHD child age group comprised 625 patient and/or proxy reporters, 54.1% of whom were male and 81.6% of whom were Caucasian. The CHD adolescent age group comprised 513 patient and/or proxy reporters, 58.7% of whom were male and 84.0% of whom were Caucasian. The sex- and race-matched healthy control group included 771 patient and/or proxy reporters. The healthy child age group had 528 patient/parent
Discussion
This study is the first to characterize HRQOL in the pediatric CHD population by both age group and disease severity. PedsQL scores of both children and adolescents with mild CHD were not significantly different from those of healthy controls, with the exception of child-reported PhysHSS. Moreover, both children and adolescents with more complex CHD had significant deficits in each HRQOL domain except for adolescent-reported EmF, which did not differ between the SV CHD group and healthy
References (38)
- et al.
The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity
Ambul Pediatr
(2003) Cognitive and affective development in adolescence
Trends Cogn Sci
(2005)- et al.
Exercise performance and quality of life following surgical repair of anomalous aortic origin of a coronary artery in the pediatric population
J Thorac Cardiovasc Surg
(2009) - et al.
Task force 1: preparticipation screening and diagnosis of cardiovascular disease in athletes
J Am Coll Cardiol
(2005) - et al.
Exercise performance and activity level in children with transposition of the great arteries treated by the arterial switch operation
Am J Cardiol
(2010) - et al.
Neurodevelopmental outcomes after biventricular repair of congenital heart defects
J Thorac Cardiovasc Surg
(2002) - et al.
Long-term neurodevelopmental outcome and exercise capacity after corrective surgery for tetralogy of Fallot or ventricular septal defect in infancy
Ann Thorac Surg
(2006) - et al.
Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial
J Thorac Cardiovasc Surg
(2003) - et al.
Attentional dysfunction in children after corrective cardiac surgery in infancy
Ann Thorac Surg
(2007) - et al.
Late neurodevelopmental outcome after repair of total anomalous pulmonary venous connection
J Thorac Cardiovasc Surg
(2005)
Psychosocial profile of adults with complex congenital heart disease
Mayo Clin Proc
Measuring health-related quality of life in children and adolescents
Quality of life in surgically palliated complex congenital heart disease
Arch Dis Child
Behavioral adjustment of children with surgically palliated complex congenital heart disease
J Pediatr Psychol
Self-estimated physical functioning poorly predicts actual exercise capacity in adolescents and adults with congenital heart disease
Eur Heart J
Comparison of health-related quality of life with cardiopulmonary exercise testing in adolescents and adults with congenital heart disease
Heart
Physical activity levels of adolescents with congenital heart disease
Aust J Physiother
Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health
Arch Dis Child
Normality of cardiopulmonary capacity in children operated on to correct congenital heart defects
Arch Pediatr Adolesc Med
Cited by (130)
Recommendations for centers performing pediatric heart surgery in the United States
2023, Journal of Thoracic and Cardiovascular SurgeryDifferences in Quality of Life in Children Across the Spectrum of Congenital Heart Disease
2023, Journal of PediatricsPrediction of Sudden Death Risk in Patients with Congenital Heart Diseases
2023, Cardiac Electrophysiology ClinicsExploring the Promise of Telemedicine Exercise Interventions in Children and Adolescents With Congenital Heart Disease
2023, Canadian Journal of CardiologyRecommendations for Centers Performing Pediatric Heart Surgery in the United States
2023, Annals of Thoracic SurgeryPatient-Reported Outcomes in Tetralogy of Fallot: The Potential of the CORRELATE Cohort
2023, Journal of the American College of Cardiology
Supported by the National Institute of Child Health and Human Development (5-K23-HD048637), the American Heart Association, Pennsylvania/Delaware Affiliate (now Great Rivers Affiliate; beginning Grant-in-Aid 0465467U), the Cincinnati Children's Hospital Research Foundation, and the Children's Hospital of Philadelphia Institutional Development Fund. The authors declare no conflicts of interest.
- ∗
A list of Pediatric Cardiac Quality of Life Inventory Testing Study Consortium sites is available at www.jpeds.com (Appendix).