Inpatient Palliative Care for Pediatric Neurologic and Neuromuscular Illnesses in the U.S.-A National Perspective

Pediatric neurologic and neuromuscular illnesses, often progressive and debilitating, require comprehensive medical management focused on enhancing quality of life. Despite the benefits of palliative care in managing symptoms and providing psychological support, there is limited knowledge on its associated factors and utilization for pediatric neurologic and neuromuscular illnesses in hospital settings.

This study analyzed the National Inpatient Sample (NIS) database, covering hospitalizations of children under 18 years with neurologic and neuromuscular diagnoses from 2016 to 2020, to examine associations of palliative care with sociodemographic, clinical, and hospital factors.

Out of 139,598 pediatric patients, 4273 (3.1%) received palliative care. Palliative care recipients were younger (mean age 5.3 vs. 6.4 years), had more diagnoses (17.8 vs. 10.9) and procedures (4.0 vs. 2.4), higher illness severity scores (3.4 vs. 2.6), longer LOS (18.7 vs. 9.9 days), and higher hospital charges ($332,559 vs. $150,727). In-hospital mortality was significantly higher among palliative care recipients (32.9% vs. 2.4%). The utilization of palliative care increased annually (OR = 1.08, 95% CI [1.05, 1.11]). Black patients had lower odds (OR = 0.90, 95% CI [0.81, 1.00]). Higher severity scores (OR = 2.09, 95% CI [1.99, 2.20]) were positively associated with palliative care. Smaller hospitals and urban nonteaching hospitals were inversely associated with palliative care utilization.

Palliative care utilization for pediatric neurologic and neuromuscular illnesses remains low, with significant disparities based on sociodemographic and hospital-related factors. Enhanced awareness and integration of palliative care in pediatric practice, especially in underutilized settings, are crucial for improving outcomes and quality of life for these patients.