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

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...

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Bibliographic Details
Published in:The Journal of pediatrics 2023-12, Vol.263, p.113701, Article 113701
Main Authors: O'Connor, Amy M., Cassedy, Amy, Wray, Jo, Brown, Kate L., Cohen, Mitchell, Franklin, Rodney C.G., Gaynor, J. William, MacGloin, Helen, Mahony, Lynn, Mussatto, Kathleen, Newburger, Jane W., Rosenthal, David N., Teitel, David, Ernst, Michelle M., Wernovsky, Gil, Marino, Bradley S.
Format: Article
Language:English
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Summary: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, and 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, and daily medications). Generalized estimation equations tested for differences in burden of illness and patient and parent-proxy PCQLI scores. Using 1482 CHD patients (60% male; 84% white; age 12.3 ± 3.0 years), latent class analysis (LCA) estimates showed 4 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 
ISSN:0022-3476
1097-6833
1097-6833
DOI:10.1016/j.jpeds.2023.113701