The scope of practice of an outpatient pediatric palliative care - oncology clinic

Outcomes 1. Describe the spectrum of provider-reported pediatric palliative care domains discussed and managed during pediatric palliative care - oncology clinic visits and how these differ across initial and follow-up visits.2. Compare the differences in palliative care domains addressed and managed in visits with pediatric patients with brain tumors versus solid tumors vs leukemia/lymphoma. Key Message This retrospective cohort study outlines the content and scope of PPC visits within pediatric oncology. Many domains are addressed in each visit, and significantly more domains were discussed near the end-of-life and in solid tumor visits where symptom management domains predominated compared to other cancer types. Abstract Introduction/Context: Pediatric palliative care (PPC) improves end-of-life outcomes for children with cancer. Though PPC visits are the ‘intervention’ in studies focused on end-of-life care, the content of PPC visits within pediatric oncology is poorly understood. Objectives Understand the scope of PPC practice that occurs during PPC outpatient visits for children with cancer. Methods This was a retrospective cohort study of patients 0-27 years with cancer seen in PPC clinic within an academic pediatric oncology center between 2017-2022. During each PPC visit, documenting providers chose the domains discussed or managed (Goals of Care, Symptom Management, and Care Coordination with respective subdomains). Data was abstracted from the electronic health record, PPC clinic database and Cancer Registry. The differences in frequency and type of domains addressed were analyzed by visit type, diagnosis group, proximity to the end-of-life, and year of clinic (2017-2022). Results There were 1,919 outpatient PPC visits across 351 patients. The median domains discussed per visit (10) did not differ between initial visits (10) and follow-ups (10) or from 2017-2022. Median domains were higher in visits < 90 days compared to visits 91+ days from end-of-life (12 vs. 10, p< 0.0001). Compared to brain tumor or leukemia/lymphoma visits, solid tumor visits addressed more symptom management domains including pain (79.9%), fatigue (33.4%), appetite (28.5%), depression (18.5%, all p< 0.001). Certain Goals of care subdomains were more frequently discussed in follow-ups compared to initial visits, notably around accommodating to the disease (93.2% vs. 86.9; p< 0.0001), advance care planning (16.4% vs. 8.8%; p< 0.0001), and code status (5.8% vs. 2.6%; p=0.01). Conclusion The scope of PPC practice is broad and each visit encompasses many domains with the most common being care coordination with oncology teams, and helping patients/families cope with the disease. More domains were addressed in solid tumor visits and at the end-of-life. Keywords Managing Suffering and Distress / Models of Palliative Care Delivery