Elsevier

The Journal of Pediatrics

Volume 164, Issue 4, April 2014, Pages 781-788.e1
The Journal of Pediatrics

Original Article
Health-Related Quality of Life Outcomes in Children and Adolescents with Congenital Heart Disease

Portions of the study were presented as a poster at the American Academy of Pediatrics' National Conference and Exhibition, San Francisco, CA, October 2-5, 2010.
https://doi.org/10.1016/j.jpeds.2013.11.066Get rights and content

Objectives

To compare health-related quality of life (HRQOL) in a group of pediatric patients with congenital heart disease (CHD) and healthy controls and patients with other chronic diseases, and to compare HRQOL among patients with CHD of various severity categories with one another, with controls, and with patients with other chronic diseases.

Study design

In this cross-sectional survey, t tests were used to compare patient and proxy-reported Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) scores (including total, physical health, and psychosocial health summary scores) in children (aged 8-12 years) and adolescents (aged 13-18 years) between controls and (1) a composite CHD population; and (2) patients in each of 3 CHD severity categories: mild (no intervention), biventricle (BV; postintervention), and single ventricle (SV; postpalliation). PedsQL scores among CHD severity categories were compared by ANOVA. PedsQL scores were also compared in the CHD population and children with other chronic diseases without age stratification using t tests.

Results

There were 1138 (children, n = 625; adolescents, n = 513) and 771 (children, n = 528; adolescents, n = 243) patient and/or proxy reporters in the CHD and healthy control groups, respectively. Total, physical health, and psychosocial health summary scores were lower in the composite CHD, BV, and SV groups compared with controls (P < .0001). There were significant differences among disease severity categories for all scores (P < .01). The composite CHD, BV, and SV groups had similar PedsQL scores as end-stage renal disease, asthma, and obesity populations.

Conclusion

Children and adolescents with BV and SV CHD have significantly lower HRQOL than healthy controls and similar HRQOL as patients with other chronic pediatric diseases. Interventions targeting both physical and psychosocial domains are needed to improve HRQOL in this high-risk population.

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)

  • T. Horner et al.

    Psychosocial profile of adults with complex congenital heart disease

    Mayo Clin Proc

    (2000)
  • D. Drotar

    Measuring health-related quality of life in children and adolescents

    (1998)
  • F.A. Casey et al.

    Quality of life in surgically palliated complex congenital heart disease

    Arch Dis Child

    (1994)
  • F.A. Casey et al.

    Behavioral adjustment of children with surgically palliated complex congenital heart disease

    J Pediatr Psychol

    (1996)
  • A. Gratz et al.

    Self-estimated physical functioning poorly predicts actual exercise capacity in adolescents and adults with congenital heart disease

    Eur Heart J

    (2009)
  • A. Hager et al.

    Comparison of health-related quality of life with cardiopulmonary exercise testing in adolescents and adults with congenital heart disease

    Heart

    (2005)
  • D. Lunt et al.

    Physical activity levels of adolescents with congenital heart disease

    Aust J Physiother

    (2003)
  • B.W. McCrindle et al.

    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

    (2007)
  • K. Norozi et al.

    Normality of cardiopulmonary capacity in children operated on to correct congenital heart defects

    Arch Pediatr Adolesc Med

    (2005)
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    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).

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