The Current State of Neonatal Neurodevelopmental Follow-Up Programs in North America: A Children’s Hospitals Neonatal Consortium Report

Objective: To determine neonatal neurodevelopmental follow-up (NDFU) practices across academic centers. Study Design: Cross-sectional survey that addressed center specific neonatal NDFU practices within the Children's Hospitals Neonatal Consortium. Result: Survey response rate was 76% and 97% of respondents had a formal NDFU program. Programs were commonly staffed by neonatologists (80%), physical therapists (77%), and nurse practitioners (74%). Median gestational age at birth identified for follow-up was ≤32 weeks (range 26-36). Median duration was 3 years (range 2-18). Ninety-seven percent of sites used Bayley Scales of Infant and Toddler Development, but instruments used varied across ages. Scores were recorded in discrete electronic data fields at 43% of sites. Social determinants of health data were collected by 63%. Care coordination and telehealth services were not universally available. Conclusion: NDFU clinics are almost universal within CHNC centers. Commonalities and variances in practice highlight opportunities for data sharing and development of best practices.