Understanding the Impact of Congenital Heart on Behavior, Quality of Life, and Self-Perception in Adolescents Open Access

Knight, Jessica Holley (2016)

Permanent URL: https://etd.library.emory.edu/concern/etds/6m311p758?locale=en


Congenital heart disease (CHD) is the most common type of birth defect. Advancements in treatment of this condition over the last several decades have dramatically improved the survival rate in these patients. However, evidence of cognitive and other developmental differences between affected children and healthy peers has raised concern over the long term impacts of this condition and its treatments. Previous literature has been limited on its assessment of these potential impacts in affected adolescents. Additionally, available studies have mostly focused on more severe forms of CHD and lacked adequate information to control for potential confounding. Therefore, the goal of this dissertation was to assess behavior, quality of life, and self-perception in a large sample of adolescents, 11-18 years old, surgically treated for CHD using siblings without a birth defect and normative samples for comparison. Using the Child Behavior Checklist parents reported increased internalizing behavior problems, such as anxiety and depression, for their child with CHD compared with their sibling (mean difference = 4.3, 95% CI = 2.7 - 5.9). Seventeen percent of the children with CHD were reported to have clinically significant internalizing behavior problems compared with the expected 10% from population norms for this instrument. Parents also reported lower quality of life for their child with CHD compared with their siblings on all composite scores measured by the PedsQL, physical health, psychosocial health, and total quality of life. After adjusting for gender and age, the child with CHD scored 7.6 points lower on physical health (95% CI: -11.4, -3.7) and 6.8 points lower on psychosocial health (95% CI: -10.1, -3.5) than their unaffected sibling. Adolescents' perspective of the impact of CHD was assessed using the Harter Self-Perception Profile and self-reported quality of life on the PedsQL. The adolescents with CHD generally reported normal self-esteem but lower quality of life than normative samples of healthy children. Increased severity of CHD was associated with lower perceived physical health, psychosocial health, and quality of life related to symptoms. After adjustment, other factors including household income and total number of cardiac surgeries were more strongly related to quality of life than defect severity. The results of this dissertation suggest that those with CHD face behavioral and quality of life challenges even years after the defect has been repaired. As these differences were not only observed in those with the most severe forms of CHD, and defect severity does not appear to be the strongest influence on these outcomes, parents and clinicians should monitor all children with CHD requiring surgical intervention. Further research should utilize longitudinally collected data to better identify risk factors for these outcomes in the CHD population.

Table of Contents

Chapter 1. Background and significance. 1

Chapter 2. Behavior in adolescents with congenital heart disease and their unaffected siblings. 31

Chapter 3. Parent-reported quality of life in adolescents with congenital heart disease: a sibling study. 51

Chapter 4. Self-esteem and self-reported quality of life in adolescents with congenital heart disease. 70

Chapter 5. Comparison of parent- and child-reported quality of life among adolescents with congenital heart disease. 106

Chapter 6. Conclusion and future directions. 114

References. 125

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