Differences in Quality of Life in Children Across the Spectrum of Congenital Heart Disease

Abstract

To create complexity groups based upon a patient's cardiac medical history and to test for group differences in health-related quality of life (HRQOL). Patients 8-18 years with congenital heart disease (CHD) and parent-proxies from the Pediatric Cardiac Quality of Life Inventory (PCQLI) Testing Study were included. Outcome variables included PCQLI Total, Disease Impact, and Psychosocial Impact scores. Using a patient's medical history (cardiac, neurologic, psychological, cognitive diagnosis), latent class analysis (LCA) was used to create CHD complexity groups. Covariates included demographics and burden of illness (number of: school weeks missed, physician visits in the past year, daily medications). Generalized estimation equations tested for differences in burden of illness and patient and parent-proxy PCQLI scores. Using 1,482 CHD patients (60% male; 84% white; age 12.3±3.0 years), LCA estimates showed four distinct CHD complexity groups (Mild, Moderate 1, Moderate 2, and Severe). Increasing CHD complexity was associated with increased risk of learning disorders, seizures, mental health problems, and history of stroke. Greater CHD complexity was associated with greater burden of illness (p<0.01) and lower patient- and parent-reported PCQLI scores (p<0.001). LCA identified four CHD complexity groupings. Increasing CHD complexity was associated with higher burden of illness and worse patient- and parent-reported HRQOL.