Context: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access.
Objectives: To describe the inaugural four years (2017-2021) of an academic, consultative, embedded SCC within pediatric oncology.
Methods: Descriptive statistics (demographic, disease, treatment, visit, and end-of-life) and change over time were calculated.
Results: During the first four years, 248 patients (51.6% male; 58.1% White; 35.5% Black; 13.7% Hispanic/Latino) were seen in SCC, totaling 1,143 clinic visits (median 4, IQR 2,6), including 248 consultations and 895 follow-up visits. Clinic visits grew nearly 300% from year one to four. Primary diagnoses were central nervous system tumor (41.9%), solid tumor (37.5%), and leukemia/lymphoma (17.3%). The first point of PPC contact became SCC (70.6%) for most referred patients. Among the 136 deceased patients (54.8%), 77.9% had a do-not-resuscitate or Physician Orders for Life Sustaining Treatment in place, and 72.8% received hospice care. When known (n = 112), 89.3% died in their preferred location. The time from SCC consultation to death increased from 74 to 226 days over the four years (P < 0.0001). The proportion of SCC consultations that occurred greater than 90 days from death increased from 39.1% in year one to 85.0% in year four.
Conclusion: Embedded SCC clinics can be successful, achieve steady growth, improve referrals and timing of PPC, and enhance end-of-life care for children with cancer. Large pediatric cancer centers should include SCC outpatient services.
Keywords: Pediatric palliative care; end-of-life; outpatient clinic; palliative oncology; pediatric oncology; supportive care.
Copyright © 2022. Published by Elsevier Inc.