Palliative Care Services within a Pediatric Hematology-Oncology Program in a Low-Resource Setting

Palliative Care Services within a Pediatric Hematology-Oncology Program in a Low-Resource Setting

Silverstein A; Butia M; Bank R; Manda G; Nyasulu C; Mwango N; Makuti S; Chikasema M; Torrey S; Hesselgrave J; Casas J; Thambo L; Msekandiana A; Chiume M; Ozuah N; Huibers MH

Journal of Pain and Symptom Management

2022

global health; hematology; oncology; Pediatrics; sub-Saharan Africa

CONTEXT: Outcomes for children with cancer in sub-Saharan Africa (SAA) are dismal due to delayed diagnosis and limited access to curative therapy. When establishing a pediatric hematology-oncology (PHO) program in low-resource settings, early integration of palliative care services becomes essential. While palliative care is a human right, equitable distribution is lacking. OBJECTIVES: We aim to describe our experience establishing a palliative care program, the services offered, and the distribution of patients served. METHODS: This is a brief description of our PHO palliative care program in Lilongwe, Malawi at a tertiary care center and a three-year retrospective review of activities (2017-2020). Services offered include inpatient, outpatient, home visits, end of life care, and strengthening of referral systems. RESULTS: Over the 3-year period, 315 patients were enrolled. Fifty-seven percent (n=179) were male. The median age was 7 years (5 months - 22 years). Patients served were from 17 of 28 districts within Malawi. Diagnoses of patients included 43% solid tumors (n=135), 22% lymphoma (n=68), 15% leukemia (n=47) and 21% hematologic disease (n=65). Forty percent of patients have died (n=125), with 53% of deaths occurring at home (n=66), 22% in the hospital (n=28), and 25% at unknown locations (n=31). CONCLUSION: Palliative care is a critical component of PHO programs worldwide. Programs must leverage existing networks to ensure optimal care to children and families. We demonstrate the feasibility of integrating palliative care services within a PHO program in a low-resource setting, which could serve as a model for other countries in SSA.

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2022 Special Edition Low Resource Setting Issue