Early Palliative Care Is Feasible and Acceptable in Pediatric Neuro-Oncology

Children with central nervous system (CNS) tumors face high morbidity and mortality, yet often do not receive palliative care (PC). There is evidence of the benefit of PC in pediatric oncology, though the ideal timing remains unknown. We aimed to evaluate the feasibility and acceptability of early PC for children with high-risk CNS tumors.

Children at Children's of Alabama with CNS tumors (2019-2022) with high mortality risk (e.g., glioblastoma) were referred to PC at the time of diagnosis/relapse, facilitated by PC and research assistants attending neuro-oncology clinical team meetings. PC aimed to see children within 2 weeks of index event (IE), then as clinically indicated. For feasibility, we assessed time from IE to PC consult and total PC visits. For acceptability, we conducted semi-structured interviews with parents and clinicians about perceptions of early PC.

Eighteen children (nine female, 14 non-Hispanic White) were eligible. Median IE age was 6 years (interquartile range [IQR] = 2-11 years). All children saw PC; median of 11 days (IQR = 4-20 days) after their IE, with a median of eight (IQR = 4-20) PC visits. Fourteen parents (11 female, nine non-Hispanic White) and nine clinicians (five physicians, four nurse practitioners) were interviewed. Parents and clinicians reported benefits in symptom management, decisional and family support, and preservation of hope. Clinicians benefited from partnering in complex care and learning PC skills. Notably, caregivers appreciated PC involvement, yet clinicians were anxious about introducing PC.

This study demonstrates the feasibility and acceptability of early PC in pediatric neuro-oncology; however, clinician, but not family, discomfort with early PC remains a barrier.