Date of Award


Document Type

Campus Access Dissertation

Degree Name

Doctor of Philosophy (PhD)



First Advisor

Laura Hayman

Second Advisor

Patricia Hickey

Third Advisor

Libin Zhang


Objective: To examine factors associated with medical home quality and parents' perceptions of Health-Related Quality of Life (HRQOL) in school-age children with Congenital Heart Defects (CHDs) who underwent surgical cardiac repair in their first year of life.

Background: Wagner's Chronic Care Model guided this study. Many children with CHDs often require surgery within the first year of life and ongoing comprehensive care thereafter. Little is known regarding the impact of this ongoing care on the child's HRQOL in the pediatric cardiac population. Pediatric medical homes are becoming a necessary part of the health care system. Understanding factors associated with medical home quality and its effects on a child's HRQOL in children with CHDs is necessary to better evaluate outcomes of care and better inform policies around pediatric medical home models of care.

Data Sources: Data was obtained through electronic survey of two national and community-based non-profit organizations that offer support to children with CHD and their families. They were the National Association for Children's Heart Disorders (also known as Kids With Heart) and Mended Little Hearts (MLH).

Methods: Descriptive analyses described characteristics of parents' of children with CHDs, including education level, marital status and living arrangements. Descriptive analyses also described children with CHDs including age, gender, race/ethnicity and health status (disease-severity). RACHS-1 was used as a risk-adjustment method for disease-severity. Risk categories are based on the presence or absence of a specific diagnosis, where Risk Category 1 was the lowest disease-severity and Risk Category 6 had the highest disease-severity. Parents' perceptions of HRQOL of school-age children were summarized, and disease severity and parents' perceptions of child's overall HRQOL were examined. Similarly, the relationship between parent-perceived HRQOL of children with CHDs and parents' perceptions of factors associated with medical home quality were also studied.

Results: School-age children with CHDs had an overall good health-related quality of life as reported by their parents. Parents perceived that children with more severe cardiac defects had significantly worse HRQOL (p<.01). Parents also reported that the older a child, the lower their health-related quality of life (general) (ages 8-12 mean=68.3 SD=16.1; ages 5-7 mean=72.8 SD=16.8). Medical home quality was not strongly associated with the child's general HRQOL or cardiac-specific HRQOL (P>0.05).

Conclusion: This research study provided descriptive information on the parent-perceived health- status (disease severity) of children with CHDs. While CHDs are the most common type of birth defect, more should be known regarding the severity of illness and implications that having a CHD has on a child's HRQOL.


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