618 - Characterization of Neurodevelopmental Follow-Up Programs within the Children’s Hospital Neonatal Consortium (CHNC)

Poster Number: 618
Publication Number: 618.1402

Background: Association between neurodevelopmental impairment and common neonatal diagnoses, especially hypoxic-ischemic encephalopathy (HIE), bronchopulmonary dysplasia (BPD) and necrotizing enterocolitis (NEC), is established. In-hospital outcomes, e.g. need for tube feedings at discharge or brain MRI findings, may serve as proxies for neurodevelopmental outcome at discharge, but longer term outcomes are not readily available within the CHNC database. As a first step to address this gap, a landscape analysis was performed.

Objective: Determine neurodevelopmental follow-up (NDFU) practices across academic centers.

Design/Methods: A survey including closed- and open-ended questions was disseminated via REDCap throughout CHNC, targeting directors of neurodevelopmental follow-up (NDFU) programs. The survey closed after 12 weeks. All results received were included in this analysis.

Results: Thirty-five sites responded (76%). Of these, 97% had formal NDFU programs; over half divided clinics by diagnoses, most commonly prematurity, HIE, and congenital heart disease (CHD). Among preterm infants, the median gestational age qualifying for NDFU was 32 weeks (range 26 to 36 weeks). Common diagnostic indicators for follow-up other than gestational age are listed in Table 1. Median duration of follow-up was 3 years and did not differ between full or preterm (range: term 1-12 years, preterm 2-18 years). Both groups were most frequently followed every 6 months, but more frequently at younger ages and less frequently when older. Clinics were most often staffed by the practitioners listed in Figure 1. The most commonly used instruments/questionnaires are listed in Figure 2. HINE, GMA and ASQ were commonly used at 1-3 months, BSID, HINE and ASQ at 12 months, BSID, MCHAT and HINE at 24 months, and WPPSI, DAS and CBCL at 4-5 years. Most frequently used questionnaires were MCHAT and ASQ, language assessment was PLS, and school readiness assessments were WPPSI and Beery VMI. A majority of programs offered telehealth (60%) and asked questions regarding social influencers of health (63%), while a minority had dedicated care coordinators (46%) or were integrated within comprehensive care clinics (40%).

Conclusion(s): Neurodevelopmental data are available for patients with common diseases qualifying them for NDFU, including HINE, GMA, BSID, ASQ and MCHAT scores for younger ages and WPPSI, DAS and CBCL scores for older ages. Variance in programs may suggest different goals as well as different available resources. Integrating selected NFDU data into the CHNC database will lead to more robust outcome reports for diagnoses of interest.