O3205: Palliative care services in technology dependent infants falls short of American Academy of Pediatric recommendations

Background: For more than two decades, the American Academy of Pediatrics has promoted the importance of integrating multidisciplinary palliative care services (PCS) for children with serious or life-limiting illnesses. Infants with severe bronchopulmonary dysplasia (BPD) who undergo tracheostomy have substantial morbidity and mortality risks and may benefit from PCS engagement. Utilization of PCS in these infants is unknown. Our aim was to explore the trends in PCS utilization in infants with severe BPD who undergo tracheostomy for prolonged ventilation during their initial hospital stay.

Methods: The Pediatric Health Information System database, a national database of de-identified inpatient administrative, diagnostic and treatment data from children’s hospitals, was utilized for this retrospective study. Infants discharged from a neonatal intensive care unit from 2013-2022 with encounter coding for BPD and tracheostomy were included. Encounters with incomplete data and centers without coding for PCS were excluded. Patient and disease characteristics including the number of complex chronic conditions (CCC) were analyzed. A multivariable logistic regression model which included center effect was used to evaluate the association between demographic and clinical variables on receipt of PCS.

Results: The cohort included 1078 infants from 32 centers of whom 87% survived to hospital discharge. The mean gestational age was 28.7 4.9 weeks and mean weight was 1298 893 grams. Fourteen percent of the cohort received PCS with significant center variability ranging from 5-75%. The average number of CCC categories in which patients had conditions was 5.5 1.3. Univariate analysis showed higher odds of receiving PCS if Hispanic [OR 2.07 (CI 1.35-3.16), p=0.001] and in those who died in hospital [OR 4.78 (CI 3.2-7.12), p < 0.001]. Multivariate analysis showed higher odds of receiving PCS if female [OR 1.74 (CI 1.14-2.65), p 0.01] and for those who died in hospital [OR 9.41 (CI 5.68-15.59), p < 0.001]. The odds of receiving PCS increased over the 10-year study period [OR 1.18 (CI 1.09-1.28), p < 0.001]. There was no statistically significant association between the number of CCC and the use of PCS.

Conclusion: Palliative care is underutilized in infants with severe BPD who undergo tracheostomy for chronic ventilation despite the AAP recommendations most recently updated in 2013. Surprisingly, the burden of numerous CCC did not influence the use of PCS. The wide center variation in PCS may represent the limited availability of palliative medicine providers in children’s hospitals and may explain why hospital non-survivors were most likely to receive PCS. Future work is needed to understand the lack of adherence to AAP recommendations in this population and underscores the likely deficiency in services available to technology-dependent infants.