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J Pediatr. 2014 Apr;164(4):781-788.e1. doi: 10.1016/j.jpeds.2013.11.066. Epub 2014 Jan 10.

Health-related quality of life outcomes in children and adolescents with congenital heart disease.

Author information

1
Division of Cardiology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH. Electronic address: katelyn.mellion@rockets.utoledo.edu.
2
Division of Cardiology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
3
Department of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
4
Division of Behavioral and Clinical Psychology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
5
Division of Cardiology, Department of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, PA.
6
Division of Cardiology, Department of Pediatrics, Children's Hospital Boston, Boston, MA.
7
Division of Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center Dallas, Dallas, TX.
8
Division of Cardiology, Department of Pediatrics, Children's Hospital of Wisconsin, Milwaukee, WI.
9
Department of Cardiology, Phoenix Children's Hospital, Phoenix, AZ.
10
Department of Psychology and Neuroscience, Baylor University, Waco, TX.
11
Division of Cardiology, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH; Division of Critical Care Medicine, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.

Abstract

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.

PMID:
24412135
DOI:
10.1016/j.jpeds.2013.11.066
[Indexed for MEDLINE]

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