Differences in Quality of Life in Children Across the Spectrum of Congenital Heart Disease - 23/11/23
, Jo Wray, PhD, MSc 4, Kate L. Brown, MRCP, MPH 4, Mitchell Cohen, MD 5, 6, Rodney C.G. Franklin, MBBS, MD 7, J. William Gaynor, MD 8, Helen MacGloin, MD 7, Lynn Mahony, MD 9, Kathleen Mussatto, RN, PhD 10, Jane W. Newburger, MD, MPH 11, David N. Rosenthal, MD 12, David Teitel, MD 13, Michelle M. Ernst, PhD 14, Gil Wernovsky, MD 15, 16, Bradley S. Marino, MD, MPP, MSCE, MBA 17Abstract |
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.
Le texte complet de cet article est disponible en PDF.Abbreviations : AS, ASO, BAV, CHD, CoA, DI, TGA, GLM, HRQOL, IQR, LCA, PCQLI, PI, QOL, SD, TOF, TOF–PA, VSD
Plan
| Ethics Approval: Ann & Robert H. Lurie Children's Hospital of Chicago was the lead site for this multi-center study. IRB approval was obtained Ann & Robert H. Lurie Children's Hospital of Chicago (IRB#: 2009-13896). The Institutional Review Boards and Ethics Committees of all other participating institutions approved the study, and parents and patients gave informed consent and assent, as applicable. |
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| Consent to Participate: Informed consent and assent, as applicable, was obtained from all individual participants included in the study.” Written informed consent was obtained from the parents, as applicable. |
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| Consent to Publish: This manuscript does not contain any individual person's data in any form (including any individual details, images, or videos). |
Vol 263
Article 113701- décembre 2023 Retour au numéro
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