TY - JOUR
T1 - Differences in Quality of Life in Children Across the Spectrum of Congenital Heart Disease
AU - O'Connor, Amy M.
AU - Cassedy, Amy
AU - Wray, Jo
AU - Brown, Kate L.
AU - Cohen, Mitchell
AU - Franklin, Rodney C.G.
AU - Gaynor, J. William
AU - MacGloin, Helen
AU - Mahony, Lynn
AU - Mussatto, Kathleen
AU - Newburger, Jane W.
AU - Rosenthal, David N.
AU - Teitel, David
AU - Ernst, Michelle M.
AU - Wernovsky, Gil
AU - Marino, Bradley S.
N1 - Publisher Copyright:
© 2023 Elsevier Inc.
PY - 2023/12
Y1 - 2023/12
N2 - Objective: 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). Methods: 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. Results: 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 < .01) and lower patient- and parent-reported PCQLI scores (P < .001). Conclusions: LCA identified 4 congenital heart disease (CHD) complexity groupings. Increasing CHD complexity was associated with higher burden of illness and worse patient- and parent-reported HRQOL.
AB - Objective: 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). Methods: 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. Results: 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 < .01) and lower patient- and parent-reported PCQLI scores (P < .001). Conclusions: LCA identified 4 congenital heart disease (CHD) complexity groupings. Increasing CHD complexity was associated with higher burden of illness and worse patient- and parent-reported HRQOL.
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U2 - 10.1016/j.jpeds.2023.113701
DO - 10.1016/j.jpeds.2023.113701
M3 - Article
C2 - 37640230
AN - SCOPUS:85171333188
SN - 0022-3476
VL - 263
JO - Journal of Pediatrics
JF - Journal of Pediatrics
M1 - 113701
ER -