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

Vilmaris Quiñones Cardona; Susan S 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 S Shenberger; An N Massaro; Girija Natarajan; Rakesh Rao; Maria L V Dizon; Children's Hospitals Neonatal Consortium

doi:10.1055/a-2283-8843

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

Am J Perinatol. 2024 Apr 5. doi: 10.1055/a-2283-8843. Online ahead of print.

Authors

Vilmaris Quiñones Cardona^#¹, Susan S Cohen^#², Noah Cook³, Mehmet N Cizmeci⁴, Amit Chandel⁵, Robert DiGeronimo⁶, Semsa Gogcu⁵, Eni Jano⁷, Katsuaki Kojima⁸, Kyong-Soon Lee⁴, Ryan M McAdams⁹, Ogechukwu Menkiti¹, Ulrike Mietzsch⁶, Eric Peeples¹⁰, Elizabeth Sewell¹¹, Jeffrey S Shenberger¹², An N Massaro¹³, Girija Natarajan¹⁴, Rakesh Rao¹⁵, Maria L V Dizon¹⁶; Children's Hospitals Neonatal Consortium

Affiliations

¹ Division of Neonatology, Department of Pediatrics, Drexel University, St. Christopher's Hospital for Children, Philadelphia, Pennsylvania.
² Division of Neonatology, Department of Pediatrics, Medical College of Wisconsin, Children's Wisconsin, Milwaukee, Wisconsin.
³ Division of Neonatology, Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
⁴ Division of Neonatology, Department of Pediatrics, University of Toronto, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁵ Division of Neonatology, Department of Pediatrics, Wake Forest University, Brenner Children's Wake Forest Baptist Health, Winston-Salem, North Carolina.
⁶ Division of Neonatology, Department of Pediatrics, University of Washington Medical School, Seattle Children's Hospital, Seattle, Washington.
⁷ Division of Neonatology, Department of Pediatrics, University of Southern California, Children's Hospital Los Angeles, Los Angeles, California.
⁸ Division of Neonatology, Department of Pediatrics, University of Cincinnati, Cincinnati Children's, Cincinnati, Ohio.
⁹ Division of Neonatology, Department of Pediatrics, University of Wisconsin, American Family Children's Hospital, Madison, Wisconsin.
¹⁰ Department of Pediatrics, Division of Neonatology, University of Nebraska, Children's Hospital & Medical Center, Omaha, Nebraska.
¹¹ Division of Neonatology, Department of Pediatrics, Children's Healthcare of Atlanta and Emory University School of Medicine, Atlanta, Georgia.
¹² Division of Neonatology, Department of Pediatrics, University of Connecticut, Connecticut Childrens, Harford, Connecticut.
¹³ Division of Neonatology, Department of Pediatrics, George Washington University, Children's National Medical Center, Washington, District of Columbia.
¹⁴ Division of Neonatology, Department of Pediatrics, Wayne State University, Children's Hospital of Michigan, Detroit, Michigan.
¹⁵ Division of Neonatology, Department of Pediatrics, Washington University School of Medicine, St. Louis Children's Hospital, St. Louis, Missouri.
¹⁶ Division of Neonatology, Department of Pediatrics, Northwestern University, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.

^# Contributed equally.

PMID: 38458236
DOI: 10.1055/a-2283-8843

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.

Key points: · Neonatal NDFU clinics help transition high-risk infants home.. · Interdisciplinary neonatal intensive care unit follow-up brings together previously separated outpatient service lines.. · This study reviews the current state of neonatal NDFU in North America..