Factors affecting rates of neurodevelopmental follow-up in infants with congenital heart disease.

Background: Neurodevelopmental outcomes programs for children with congenital heart disease (CHD) support early identification and intervention for developmental impairments; however, not all eligible children attend such programs. The purpose of our study was to examine factors, including sociodemographic, associated with cardiac neurodevelopmental outcomes program attendance. Methods: Children with CHD born April 2013-April 2018 who underwent cardiac surgery before age 6 months were included. The primary outcome was at least one neurodevelopmental clinic visit, and secondary outcome was number of visits attended during the first two years of life. Predictor variables included maternal and infant characteristics, surgical data, geographic location of residence, and neighborhood-level socioeconomic metrics. Results: Of 730 eligible infants, median age at surgery was 13 days (IQR 7-44), and 37% were Hispanic, 45% were non-Hispanic White, and 10% were non-Hispanic Black. Twenty-three percent lived >200 miles from the institution. A total of 462 (63%) attended at least one visit. On multivariable analysis, factors associated with attending at least once were Hispanic ethnicity (if living <200 miles from the institution or Spanish-speaking), older maternal age, and shorter driving time. On multivariable analysis of the secondary outcome, factors associated with a greater number of visits were Hispanic ethnicity (if living <200 miles from the institution), older maternal age, shorter driving time, and private health insurance. Conclusions: Our data demonstrate that Hispanic ethnicity and closer distance from the institution were associated with increased attendance in our neurodevelopmental program. Continued education on the importance of neurodevelopmental follow-up and making adaptations to current practices to reach all individuals with CHD will be important moving forward. Whether these higher rates of attendance improve neurodevelopmental outcomes for this specific population requires further research.