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

Abstract

Objective This study aimed to determine neonatal neurodevelopmental follow-up (NDFU) practices across academic centers. Study Design This study was a cross-sectional survey that addressed center-specific neonatal NDFU practices within the Children’s Hospitals Neonatal Consortium (CHNC). Results 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.