P2C205: Barriers to Neurodevelopmental Follow-up for NICU Graduates with Severe Bronchopulmonary Dysplasia

Background: Infants with severe bronchopulmonary dysplasia (sBPD) are at increased risk for neurodevelopmental delays. Outpatient evaluation allows prompt detection of conditions such as cerebral palsy, autism spectrum disorder, intellectual disability, and sensory impairments leading to early intervention and improvement in long-term outcomes. This study analyzed the ability of patients with sBPD to complete scheduled neurodevelopmental and sensory appointments and evaluated medical factors that may impact this follow-up.

Methods: The study included patients born at < 30 weeks gestation admitted to a level IV NICU with sBPD (non-invasive positive pressure or mechanical ventilation at 36 weeks corrected age) from 2019-2021. Patients included were discharged from the hospital to home; patients transferred to rehabilitation facilities or other hospitals were excluded. Outpatient appointments scheduled between discharge and the date at which the patient reached 18 months corrected age were reviewed in electronic medical records. Appointments tracked were those for neurodevelopmental follow up clinic, subspecialties related to neurodevelopment (neurology, neurosurgery, audiology, ophthalmology), and developmental therapies (physical, occupational, and speech). Appointments that were cancelled without rescheduling or labeled as no-shows were considered missed appointments whereas appointments that were successfully rescheduled in a window deemed appropriate by the clinician were not. Medical comorbidities included respiratory support at discharge; feeding support at discharge; and presence of severe neurologic injury (Grade III-IV IVH, PVL, neurosurgical intervention, or seizure disorder), retinopathy of prematurity requiring intervention, congenital cardiac disease requiring intervention, and pulmonary hypertension requiring medication at discharge.

Results: The cohort included 59 patients with a mean gestational age of 25.98 weeks (SD 1.88). Table 1 shows demographic characteristics of the cohort as well as incidence of the neurodevelopmentally relevant medical comorbidities. The median number of appointments expected was 20 (interquartile range 11-31). The median number attended was 13 (interquartile range 6-20) for an overall rate of 65% (45-87%). Table 2 demonstrates these numbers specifically for each type of neurodevelopmentally relevant subspecialty. Additionally, patients with tracheostomy tended to have fewer total appointments between time of discharge and 18 months corrected age due to length of hospital stay. There was no significant difference in average monthly appointments (median 1.25, interquartile range 0.73-2.5). Neurologic, ophthalmologic, and cardiac comorbidities were not associated with a rates of missed appointments though there was a trend for more missed appointments in infants who required home mechanical ventilation (p= 0.9). Participation in a care coordination program was not associated with attendance rates.

Conclusion: In this cohort of patients with sBPD, 35% of neurodevelopmentally relevant follow-up appointments were missed. No medical factors were strongly predictive of follow-up rates. This may suggest that social determinants of health are a more significant driver of follow-up consistency. Further investigation into these causes may allow us to better support families and optimize neurodevelopmental and sensory outcomes.