A global assessment of access to pediatric palliative care for children with cancer in resource-constrained settings.

Abstract

87 Background: Pediatric palliative care reduces suffering, improves communication, and enhances quality of life for children with complex disease, especially children with cancer. Despite a disproportionate burden of pediatric cancer in resource-constrained settings) the provision of pediatric palliative care services is limited. We aim to describe the global landscape of palliative care services for pediatric hematology/oncology patients using data from the Abbreviated PrOFILE (Pediatric Oncology Facility Integrated Local Evaluation), a 360-degree evaluation tool assessing care capacity and guiding the development of an improvement strategy in institutions caring for children with cancer. Methods: One hundred and twelve institutions across 23 countries completed the Abbreviated PrOFILE from 2019-2021. We extracted data from questions regarding pediatric palliative care personnel and training, medications for symptom management, and patient outcomes. Results were stratified by World Bank income level. Results: The analyzed hospitals were from low (LIC) (6), lower-middle (LMIC) (34), upper-middle (UMIC) (55), and high (HIC) (17) income levels. They self-identified as primarily cancer hospitals (19%), children’s hospitals (22%), general hospitals (45%), and pediatric oncology institutions (12%). Access to specialists varied by income level with 71% of HICs, 41% of UMICs, 32% of LMICs, and 17% of LICs reporting almost always having access to palliative care specialists. These specialists were more likely to have formal education in childhood cancer in HIC (59%) compared to low- and middle-income countries. Oral morphine was reported available in 100% of HICs, 76% of UMICs, 27% of LMICs, and 33% of LICs. Injectable morphine had similar results with 100% of HICs, 96% of UMICs, 41% of LMICs, and 33% of LICs reporting almost always having availability. Ibuprofen, acetaminophen, dexamethasone, ondansetron, metoclopramide, omeprazole, diazepam, phenobarbital, and phenytoin were reported as almost always or frequently available in at least 50% of institutions in each income level. End-of-life and bereavement services were less available in LICs (17%), LMICs (18%), and UMIC (36%) than HICs (53%). Following completion of the Abbreviated PrOFILE tool, 50% of the regional cohorts set a priority to improve supportive, palliative, or end-of-life care. Conclusions: Access to pediatric palliative care services varies by income level. Despite increased need for palliative services in LMICs, there is less access to trained providers and essential medications, especially in those with decreased resources. These results will inform the implementation of improvement interventions among institutions providing care for children with cancer.