Geographical and Language-Based Factors Associated with Neurodevelopmental Follow-Up in Children with Congenital Heart Disease

Despite recommendations for early neurodevelopmental evaluation of infants who undergo complex congenital heart surgery, attendance at cardiac neurodevelopmental clinics (CNC) across the nation is low. Several studies have identified factors associated with attendance, however geographical and language-based factors have not been explored. We examined the association between geographical and language-based factors and CNC attendance. We hypothesized that patients with increased travel distance, lower neighborhood affluence, and families who speak a language other than English had lower CNC attendance. We also hypothesized increased use of interpretation services improved attendance. We performed a single center cross-sectional study by linking data from cardiac-specific quality databases, interpretation services, and geocoding tools. We performed descriptive statistics, univariate, and multivariate analysis with a primary outcome of CNC attendance before 12 months of age. Among 755 infants, 22% attended CNC. We did not detect a significant difference across all neighborhood deprivation indices (p > 0.05) and all languages (p > 0.05). Of those who did not attend CNC, 51% received greater than 2 interpretation encounters per day in comparison to 62% in those who did attend CNC (p > 0.9). Patients who lived out of state were at decreased odds of CNC attendance (OR 0.17, 95%CI 0.08-0.33). Patients who live out-of-state attend CNC less, however we failed to find a significant difference in attendance based on preferred language, frequency of interpretation services, and community deprivation index. These findings may guide interventions and future research to optimize CNC attendance.