Lessons learned from linking two complementary databases: the Society of Thoracic Surgeons Congenital Heart Surgery Database and The Vermont Oxford Network Expanded Database.

The Society of Thoracic Surgeons Congenital Heart Surgery Database and the Vermont Oxford Network Expanded Database are both large, international, well-established quality and outcomes databases with high penetration in their respective fields of congenital heart surgery and neonatology. Previous studies have shown the value of combining large databases for research purposes. Our aim was to examine the feasibility and value of combining these databases on a local level.We included patients from both databases, cared for at our centre and born from 2015-2020, who had cardiac surgery as neonates or during the birth hospitalisation. We examined the number of patients from each database and overlap between the two. We compared cardiac diagnoses, surgeries performed, pre-operative factors, mortality, and length of stay between databases.Of the 255 patients meeting criteria, 209 (81.9%) had records in both databases. The most common diagnoses in both were hypoplastic left heart syndrome, coarctation, and transposition of the great arteries. Surgical data were incompletely recorded in Vermont Oxford. Gestational age, birth weight, multiple gestation, mortality, and length of stay did not differ significantly between the databases, while the percentage of patients with an extracardiac malformation or genetic syndrome recorded was higher in the Society for Thoracic Surgeons group.Larger-scale matching and comparison studies using these databases are feasible and desirable; for some variables, a record with data from both databases may be more complete. Specific attention should be given to inclusion criteria, reconciling different schema of diagnoses, and formulating questions relying on each database's relative strengths.

Serious congenital heart disease and necrotizing enterocolitis in very low birth weight neonates.

BACKGROUND: Infants with serious congenital heart disease (CHD) appear to be at increased risk for necrotizing enterocolitis (NEC). This study aimed to quantify the incidence and mortality of NEC among very low birth weight (VLBW) neonates with serious CHD, and identify specific CHD diagnoses at the highest risk for developing NEC. STUDY DESIGN: Data were prospectively collected on 257,794 VLBW (401 to 1,500 g) neonates born from 2006 to 2011 and admitted to 674 Vermont Oxford Network US centers. Entries were coded for specific CHD diagnoses and reviewed for completeness and consistency. Survival was defined as alive in-hospital at 1 year or discharge. RESULTS: Of eligible neonates, 1,931 had serious CHD. Of these, 253 (13%) developed NEC (vs 9% in infants without CHD, adjusted odds ratio [AOR] 1.80, p<0.0001). Mortality for neonates with CHD and no NEC was 34%, vs 55% for those with CHD and NEC (p<0.0001). Both groups of CHD patients had higher mortality than infants with NEC without CHD (28%, p<0.0001). Although NEC mortality overall decreases with higher birth weight, mortality for NEC and CHD together does not. CONCLUSIONS: The incidence of NEC is significantly higher in VLBW neonates when CHD is present. The mortality of CHD and NEC together is substantially higher than that with each disease alone. Infants with atrioventricular canal appear to have higher risk for developing NEC than other CHD diagnoses. In addition to providing benchmark incidence and mortality data, these findings may have utility in the further study of the pathophysiology of NEC.

Distribution of and mortality from serious congenital heart disease in very low birth weight infants.

OBJECTIVE: To characterize serious congenital heart disease in very low birth weight (VLBW) infants (born at <1500 g or a gestational age of 22-29 weeks) in a large, international database. PATIENTS AND METHODS: We analyzed a database of 99 786 VLBW infants born or treated at 703 NICUs between calendar years 2006 and 2007. We defined serious congenital heart disease as 1 of 14 specific lesions or any other structural congenital heart disease that required surgical or medical treatment by initial hospital discharge or by the age of 1 year. We reviewed records for all infants with cardiac diagnoses and other genetic syndromes and associations to determine which had serious congenital heart disease. We excluded nonstructural disease as well as isolated and untreated atrial or ventricular septal defects. We determined the frequency of serious congenital heart disease, compared overall mortality rates of those with and without serious congenital heart disease, and determined the distribution of specific lesions and mortality for each diagnosis. RESULTS: Of 99 786 VLBW infants studied, 893 had serious congenital heart disease (8.9 per 1000). The most common lesions were tetralogy of Fallot (n = 166 [18.6% of those with serious congenital heart disease]), aortic coarctation (n = 103 [11.5%]), complete atrioventricular canal (n = 81 [9.1%]), pulmonary atresia (n = 73 [8.2%]), and double-outlet right ventricle (n = 68 [7.6%]). The mortality rate of those with serious congenital heart disease was 44%, compared with 12.7% in those without serious congenital heart disease (P < .0001). CONCLUSIONS: Serious congenital heart disease is probably more frequent in VLBW infants treated in NICUs than in the general live-born population, and the distribution reflects lesions associated with extracardiac malformations. VLBW infants with serious congenital heart disease have higher a mortality rate than those without, independent of other risk factors.