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Updated: Dec 15, 2025

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Optimizing High-risk Infant Follow-up in Nonresearch-based Paradigms: The New England Follow-up Network

Jonathan S Litt1, Erika M Edwards2, Shabnam Lainwala3

  • 1Department of Neonatology, Beth Israel Deaconess Medical Center, Boston, Mass.

Pediatric Quality & Safety
|July 14, 2020
PubMed

Insights

This study highlights a low rate of clinical follow-up for high-risk infants after Neonatal Intensive Care Unit (NICU) discharge, indicating significant opportunities for improving post-discharge care and developmental outcomes for extremely low birth weight (ELBW) infants.

Area of Science:

  • Neonatology
  • Pediatric Quality Improvement
  • Infant Development

Background:

  • Quality improvement initiatives in neonatology often cease at Neonatal Intensive Care Unit (NICU) discharge.
  • Effective follow-through care for high-risk infants, particularly extremely low birth weight (ELBW) infants, is critical for optimizing long-term health and developmental trajectories.
  • Characterizing post-discharge outcomes is essential for identifying areas needing targeted interventions.

Purpose of the Study:

  • To establish the first regional quality improvement collaborative focused on post-Neonatal Intensive Care Unit (NICU) discharge follow-through care for high-risk infants.
  • To characterize the follow-up care and outcomes of extremely low birth weight (ELBW) infants in New England.

Main Methods:

  • Eleven New England follow-up programs partnered with the Vermont Oxford Network (VON) for an ELBW data collection project.
  • Data were collected on health status and developmental outcomes at 18-24 months corrected for gestational age (CGA) for infants born ≤1,000 g or <28 weeks gestation between 2014-2016.
  • VON managed data compilation and analysis.

Main Results:

  • Only 52.0% (516/993) of eligible infants attended follow-up visits.
  • High rates of rehospitalization (33.9%), significant growth deficiencies (19.3% <10th percentile weight), and developmental concerns (9.1% cerebral palsy, 18.4% low composite score on Bayley Scales) were observed.
  • Essential screenings, such as hearing, were not consistently performed (61.4%), and substantial demographic data were missing.

Conclusions:

  • The New England Follow-up Network's initial project revealed a low rate of clinical follow-up for high-risk infants post-Neonatal Intensive Care Unit (NICU) discharge.
  • Numerous opportunities exist to enhance post-discharge care, addressing growth, development, and screening needs.
  • Future collaborative efforts will focus on improving follow-through services through shared learning and comparative outcome analysis.
Abstract

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