450 - Geographic Variation in Access to NICU Follow-up Programs in the United States

Publication Number: 4441.450

Jonathan S. Litt, Stanford University School of Medicine, Palo Alto, CA, United States; Samudragupta Bora, University Hospitals Rainbow Babies & Children's Hospital, Case Western Reserve University School of Medicine, Cleveland, OH, United States; Danielle Ehret, Robert Larner, M.D., College of Medicine at the University of Vermont, Burlington, VT, United States; Angela M. Montgomery, Yale School of Medicine, New Haven, CT, United States; Erika M. Edwards, Vermont Oxford Network, Burlington, VT, United States

Background: Infants born with very low birth weight (VLBW, < 1500g) are at risk for chronic health problems and developmental challenges after hospital discharge. Despite being standard of care for VLBW infants, high-risk infant follow-up (HRIF) rates are low nationally (~50%). A potential driver is limited geographic access; to date, little is little known about the distribution of HRIF programs across the United States.

Objective: We aimed to quantify the number of Vermont Oxford Network (VON) member NICUs with affiliated HRIF programs, describe the regional distribution of programs, and identify geographic patterns of density and sparsity of post-NICU follow-up care.

Design/Methods: All US-based VON member hospitals submitting data for VLBW infants born in 2024 and completed the annual membership survey were eligible for this study. Primary predictor was response to "Do you have a follow-up clinic to which you routinely refer infants for neurodevelopmental evaluation after hospital discharge?" Hospital characteristics included region (New England, Mid-Atlantic, East North Central, West North Central, South Atlantic, East South Central, West South Central, Mountain, Pacific), level of care, university affiliation, ownership (government, non-profit, for-profit), presence of on-site developmental care, and family support programming.

Results: Of 762 NICUs, 650 (85.2%) reported having an HRIF program to which they routinely referred infants for neurodevelopmental evaluation after discharge. NICUs in the South and Mountain regions were least likely to have follow-up programs (Table 1 and Figure 1). Overall, 8.8% (3,370) of infants received care in NICUs that did not have a follow-up program to which they could refer high-risk infants. The proportion of infants without access to a follow-up program was highest in the Mountain region (22.4%) followed by the South Atlantic (14.7%). NICUs with follow-up programs were highly likely to have surgical services, to be teaching hospitals, and to have developmental care on site. For-profit hospitals were less likely than government or non-profit hospitals to have HRIF programs. Hospitals with follow-up programs were also more likely to report other follow-through and family-centered care such as presence of a NICU reading program, onsite food pantry, and family advisory council.

Conclusion(s): Despite being standard of care, only 85% of NICUs caring for VLBW infants have follow-up programs to which they routinely refer patients. There is marked geographic variability in the distribution of HRIF programs. Addressing differential access may improve rates of HRIF participation.

Table 1. Characteristics of NICUs with and without follow-up clinics in the Vermont Oxford Network, 2024


Figure 1. Geographic distribution NICUs in the Vermont Oxford Network with and without a follow-up clinic overlayed (panel A) and separately (panels B and C).
Type A NICUs are required to transfer infants who need assisted ventilation. Type B1 centers do not perform any of the following surgeries: omphalocoele repair; ventriculo-peritoneal shunt; tracheoesophageal fistula or esophageal atresia repair; bowel resection or renanastomosis; meningomyelocele repair; cardiac catheterization; patent ductus arteriosus ligation; cardiac surgery requiring bypass. Type B2 centers perform at least 1 of the listed surgeries except cardiac surgery requiring bypass. Type C centers perform cardiac surgery requiring bypass.