Ortinau CM, Wypij D, Ilardi D, Rofeberg V, Miller TA, Donohue J, Reichle G, Seed M, Elhoff J, Alexander N, Allen K, Anton C, Bear L, Boucher G, Bragg J, Butcher J, Chen V, Glotzbach K, Hampton L, Lee CK, Ly LG, Marino BS, Martinez-Fernandez Y, Monteiro S, Ortega C, Peyvandi S, Raiees-Dana H, Rollins CK, Sadhwani A, Sananes R, Sanz JH, Schultz AH, Sood E, Tan A, Willen E, Wolfe KR, and Goldberg CS
Background and Objectives: Neurodevelopmental evaluation of toddlers with complex congenital heart disease is recommended but reported frequency is low. Data on barriers to attending neurodevelopmental follow-up are limited. This study aims to estimate the attendance rate for a toddler neurodevelopmental evaluation in a contemporary multicenter cohort and to assess patient and center level factors associated with attending this evaluation., Methods: This is a retrospective cohort study of children born between September 2017 and September 2018 who underwent cardiopulmonary bypass in their first year of life at a center contributing data to the Cardiac Neurodevelopmental Outcome Collaborative and Pediatric Cardiac Critical Care Consortium clinical registries. The primary outcome was attendance for a neurodevelopmental evaluation between 11 and 30 months of age. Sociodemographic and medical characteristics and center factors specific to neurodevelopmental program design were considered as predictors for attendance., Results: Among 2385 patients eligible from 16 cardiac centers, the attendance rate was 29.0% (692 of 2385), with a range of 7.8% to 54.3% across individual centers. In multivariable logistic regression models, hospital-initiated (versus family-initiated) scheduling for neurodevelopmental evaluation had the largest odds ratio in predicting attendance (odds ratio = 4.24, 95% confidence interval, 2.74-6.55). Other predictors of attendance included antenatal diagnosis, absence of Trisomy 21, higher Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery mortality category, longer postoperative length of stay, private insurance, and residing a shorter distance from the hospital., Conclusions: Attendance rates reflect some improvement but remain low. Changes to program infrastructure and design and minimizing barriers affecting access to care are essential components for improving neurodevelopmental care and outcomes for children with congenital heart disease., (Copyright © 2023 by the American Academy of Pediatrics.)