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Multicenter Study
. 2023 May 1;24(5):391-398.
doi: 10.1097/PCC.0000000000003190. Epub 2023 Feb 21.

Long-Term Quality of Life in Congenital Heart Disease Surgical Survivors: Multicenter Retrospective Study of Surgical and ICU Explanatory Factors

Bradley S Marino  1   2 , Amy Cassedy  3 , Katherine L Brown  4 , Rodney Franklin  5 , J William Gaynor  6 , Mirjana Cvetkovic  4 , Simon Laker  7 , Katherine Levinson  8 , Helen MacGloin  5 , Lynn Mahony  9 , Annette McQuillan  4 , Kathleen Mussatto  10 , Deirdre O'Shea  4 , Jane Newburger  11   12 , Michelle Sykes  13 , Sarah A Teele  11   12 , Gil Wernovsky  14 , Jo Wray  4
Affiliations
Multicenter Study

Long-Term Quality of Life in Congenital Heart Disease Surgical Survivors: Multicenter Retrospective Study of Surgical and ICU Explanatory Factors

Bradley S Marino et al. Pediatr Crit Care Med. .

Abstract

Objectives: Greater congenital heart disease (CHD) complexity is associated with lower health-related quality of life (HRQOL). There are no data on the association between surgical and ICU factors and HRQOL in CHD survivors. This study assess the association between surgical and ICU factors and HRQOL in child and adolescent CHD survivors.

Design: This was a corollary study of the Pediatric Cardiac Quality of Life Inventory (PCQLI) Testing Study.

Setting: Eight pediatric hospitals participating in the PCQLI Study.

Patients: Patients in the study had the Fontan procedure, surgery for tetralogy of Fallot (TOF), and transposition of the great arteries (TGAs).

Measurements and main results: Surgical/ICU explanatory variables were collected by reviewing the medical records. Primary outcome variables (PCQLI Total patient and parent scores) and covariates were obtained from the Data Registry. General linear modeling was used to create the multivariable models. There were 572 patients included: mean ± sd of age 11.7 ± 2.9 years; CHD Fontan 45%, TOF/TGA 55%; number of cardiac surgeries 2 (1-9); and number of ICU admissions 3 (1-9). In multivariable models, lowest body temperature on cardiopulmonary bypass (CPB) was negatively associated with patient total score (p < 0.05). The total number of CPB runs was negatively associated with parent-reported PCQLI Total score (p < 0.02). Cumulative days on an inotropic/vasoactive drug in the ICU was negatively associated with all patient-/parent-reported PCQLI scores (p < 0.04). Neurological deficit at discharge was negatively associated with parent-reported PCQLI total score (p < 0.02). The variance explained by these factors ranged from 24% to 29%.

Conclusions: Surgical/ICU factors, demographic, and medical care utilization variables explain a low-to-moderate amount of variation in HRQOL. Research is needed to determine whether modification of these surgical and ICU factors improves HRQOL, and to identify other factors that contribute to unexplained variability.

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Conflict of interest statement

Dr. Marino received support for article research from the National Institutes of Health, the National Institute of Child Health and Human Development (K23 Grant 5-K23-HD048637-05), the American Heart Association (0465467), and CHOP Institutional Development Fund CCHMC Research Foundation (31-554000-355514). Dr. Mahony’s institution received funding from the Cincinnati Children’s Hospital Medical Center. The remaining authors have disclosed that they do not have any potential conflicts of interest.

References

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    1. Marino BS, Lipkin PH, Newburger JW, et al.: Neurodevelopmental outcomes in children with congenital heart disease: Evaluation and management: A scientific statement from the American Heart Association. Circulation 2012; 126:1143–1172
    1. Gerstle M, Beebe DW, Drotar D, et al.: Executive functioning and school performance among pediatric survivors of complex congenital heart disease. J Pediatr 2016; 173:154–159
    1. Marino BS, Uzark K, Ittenbach R, et al.: Evaluation of quality of life in children with heart disease. Prog Pediatr Cardiol 2010; 29:131–138
    1. Drotar D: Measuring Health-Related Quality of Life in Children and Adolescents: Implications for Research and Practice. Mahwah, NJ, Lawrence Erlbaum Associates, Publishers, 1998

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