605 - Retention Strategies in a Virtual Follow-Up Program for Preterm Infants Through Age 5

Publication Number: 605.6227

Cherise Brackett, University of Virginia School of Medicine, Charlottesville, VA, United States; Movicque King, University of Virginia School of Medicine, Louisa, VA, United States; Anna Youngkin, Baylor College of Medicine, Houston, TX, United States; Antionette McFarlane, University of Virginia School of Medicine, Charlottesville, VA, United States; Kimberlee E. Meegan, University of Virginia School of Medicine, Charlottesville, VA, United States; Christina E. Sheehan, The University of Virginia, Charlottesville, VA, United States; Nicole Lock, University of Maryland School of Medicine, Baltimore, MD, United States; Lisa C. Letzkus, UVA School of Medicine, Charlottesville, VA, United States; Karen D. Fairchild, University of Virginia School of Medicine, Earlysville, VA, United States

Background: For children born preterm, early identification of neurodevelopmental and social-emotional challenges can lead to interventions to optimize school readiness. We initiated a questionnaire-based program to track neurodevelopmental progress of preterm infants through age 5 as a screen for issues warranting therapy referrals and to create a registry of parents willing to consider future studies related to enhancing school performance.

Objective: Describe a multi-pronged approach to retention in a virtual NICU follow-up registry

Design/Methods: 1. BaBI registry: In 2022, we initiated the Baby Brain Initiative (BaBI) registry, enrolling infants born at < 37 weeks gestation and their parents in a program that provides virtual (questionnaire) neurodevelopmental follow-up until age five (Table 1). Parents receive a report of the developmental screening results, which they can give to the child’s primary care provider and which is shared with NICU Follow-Up Clinic providers.
2. BuBBLE app: With a local company (Locus Health), we developed a smartphone app “Building Baby Brains” to share information about optimizing neurodevelopment. Parents who choose to have the app installed on their phone are given a gift card to help with transportation to follow-up visits.
3. Boost program: Approaches to increase retention in BaBI include: 1) discussing with parents ways to facilitate questionnaire completion 2) promoting the use of the BuBBLE app to connect with a BaBI coach, and 3) sending Boost Birthday Boxes with educational toys and books through age 5.

Results: From September 2022 to March 2024, 150 mother-infant pairs enrolled in the BaBI registry (mean gestational age 31.4 weeks; 43% female infants; 14% Black, 5% Hispanic). This represents about 25% of all preterm infants discharged from the NICU in that time frame. Table 1 shows demographic and clinical variables of infants that were scheduled for our NICU neurodevelopmental follow-up clinic, those that came to at least one follow-up appointment, and those whose parent completed at least one questionnaire about their development. The BuBBLE smartphone app with information about optimizing neurodevelopment has been given to 50 mothers. The BOOST program is under development and will launch in January 2025.

Conclusion(s): Virtual neurodevelopmental follow-up using parent questionnaires is feasible and can complement in-person visits to a NICU follow-up clinic. We are studying the impact of our BuBBLE and Boost program on retention in the BaBI program through age 5, with the ultimate goal of optimizing school readiness for children born preterm.

Table 1: Schedule of virtual follow-up
The Ages and Stages Questionnaire (ASQ) is completed every 6 months to age 2, then at 3, 4, and 5 years of age. The Infant and Toddler Checklist is completed at 12 months and the Quantitative Checklist for Autism in Toddlers (Q-CHAT) at 18 and 24 months. Age is corrected for prematurity until 24 months chronologic age. The Vineland Adaptive Behavior Scales parent/caregiver form is completed annually ages 2-5, and the Bracken School Readiness Assessment will be performed in a short Zoom session at age 4.

Table 2: Demographics of BaBI enrolled infants and follow-up rates
Of the first 150 infants enrolled in the BaBI registry, 50% came to a NICU neurodevelopmental follow-up clinic visit (an additional 29% missed or cancelled a scheduled appointment). BaBI questionnaire follow-up rate is 71%. Differences in clinic and virtual follow-up rates based on sex, race and ethnicity are shown. Efforts are underway to increase feasibility of both in-person and virtual neurodevelopmental follow-up for all families of preterm infants discharged from our NICU.