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

Vilmaris Quiñones Cardona, Susan Cohen, Noah Cook, Mehmet N. Cizmeci, Amit Chandel, Robert DiGeronimo, Semsa Gogcu, Eni Jano, Katsuaki Kojima, Kyong Soon Lee, Ryan M. McAdams, Ogechukwu Menkiti, Ulrike Mietzsch, Eric Peeples, Elizabeth Sewell, Jeffrey Shenberger, An Massaro, Girija Natarajan, Rakesh Rao, Maria Dizon

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish (US)
JournalAmerican Journal of Perinatology
DOIs
StateAccepted/In press - 2024

Keywords

  • Children’s Hospitals Neonatal Consortium
  • Hypoxic-ischemic encephalopathy
  • Neurodevelopmental follow-up

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Obstetrics and Gynecology

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