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

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 parentreported 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.

Hemodynamic Melody of Postnatal Cardiac and Pulmonary Development in Children with Congenital Heart Diseases

“…The lack of neonatal rodent models for cardiac VO, PO, IPF, and RPF limits our understanding of how hemodynamics regulates postnatal heart and lung development [23,28,30,31]. Consequently, managing CHD primarily relies on surgical intervention, and thus the longterm quality of life for children with complex CHD remains poor [112,113]. The challenges of creating neonatal rodent CHD models are as follows: (1) the size of the neonatal rodent heart is extremely small, with limited operation space; (2) neonatal anesthesia is ice cooling, limiting the surgical time to no more than 20 min; and (3) cannibalization may account for additional post-surgical mortality in neonatal surgery.…”

Patient-Reported Outcomes and Resilience in Patients With Congenital Heart Disease

“…Other than mortality and morbidity, there is increasing emphasis on assessing and improving psychosocial outcomes in CHD patients. 1 , 2 Interventions to improve these outcomes are also increasingly discussed and being sought. Building psychological resilience represents an area of interest and research in improving the psychosocial outcomes of adult congenital heart disease (ACHD) patients.…”