Faculty Collaboration Database

Health-related quality of life outcomes in children and adolescents with congenital heart disease. J Pediatr 2014 Apr;164(4):781-788.e1

Date

01/15/2014

Pubmed ID

24412135

DOI

10.1016/j.jpeds.2013.11.066

Scopus ID

2-s2.0-84896544743 (requires institutional sign-in at Scopus site)   131 Citations

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.

Author List

Mellion K, Uzark K, Cassedy A, Drotar D, Wernovsky G, Newburger JW, Mahony L, Mussatto K, Cohen M, Limbers C, Marino BS, Pediatric Cardiac Quality of Life Inventory Testing Study Consortium

Author

Kathleen Mussatto Ph.D. Associate Professor in the School of Nursing department at Milwaukee School of Engineering

MESH terms used to index this publication - Major topics in bold

Adolescent
Child
Chronic Disease
Cross-Sectional Studies
Female
Heart Defects, Congenital
Heart Diseases
Humans
Male
Quality of Life
Retrospective Studies