• Pediatr Crit Care Me · May 2023

    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, Amy Cassedy, Katherine L Brown, Rodney Franklin, J William Gaynor, Mirjana Cvetkovic, Simon Laker, Katherine Levinson, Helen MacGloin, Lynn Mahony, Annette McQuillan, Kathleen Mussatto, Deirdre O'Shea, Jane Newburger, Michelle Sykes, Sarah A Teele, Gil Wernovsky, and Jo Wray.
    • Pediatric Institute, Department of Cardiology, Cleveland Clinic Children's, Cleveland, OH.
    • Pediatr Crit Care Me. 2023 May 1; 24 (5): 391398391-398.

    ObjectivesGreater 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.DesignThis was a corollary study of the Pediatric Cardiac Quality of Life Inventory (PCQLI) Testing Study.SettingEight pediatric hospitals participating in the PCQLI Study.PatientsPatients in the study had the Fontan procedure, surgery for tetralogy of Fallot (TOF), and transposition of the great arteries (TGAs).Measurements And Main ResultsSurgical/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%.ConclusionsSurgical/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.Copyright © 2023 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

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