Introduction
Children and adolescents with cancer in low- and middle-income countries (LMICs) have poor outcomes and improving their care is a significant global health priority.1 Five-year survival rates for children with cancer in high-income countries (HICs) are approximately 80%, but are estimated to be only 30% in LMICs.1–4In sub-Saharan Africa (SSA), pediatric cancer experiences are often marked by high rates of treatment failure, due to poor treatment access, high treatment abandonment, and high treatment-related mortality.1,2,4–6 Additionally, palliative and supportive care capacity is limited for children with cancer in SSA.4 Ongoing efforts in SSA to improve survival rates include numerous initiatives to identify and implement context-specific adaptions of standard HIC approaches.1,4,7–9
Patient-reported outcomes (PROs) offer an important opportunity to incorporate patients’ voices and experiences in evidenced-based interventions across SSA. PROs have become a routine part of oncologic care in many HICs and measure how mental, physical, and social health-related quality of life (HRQoL) are affected by cancer diagnosis, treatment, and survivorship. PROs provide critical information to complement clinical assessments, monitor disease- and treatment-related adverse events, and guide symptom management.10–16Standardized instruments for self-reporting HRQoL domains were created by the United States National Institutes of Health Patient-Reported Outcomes Measurement Information System®(PROMIS®) initiative. Patient-reported HRQoL measures are a more sensitive measure of functional status than clinician-reported assessments, and incorporating PROs into cancer treatment can improve outcomes and survival.14,16Despite their utility and frequent use in HICs, PROs are rarely used in SSA.
We hypothesized that patient-reported HRQoL would have particular utility in Malawi, where curative-intent treatments are often limited, advanced stage diagnoses are common, the risk for treatment-related toxicity is high, and supportive care infrastructure is often insufficient. The Pediatric PROMIS measures have been validated among pediatric and adolescent cancer patients in the United States.17–19 In prior work, our group has translated and validated the Pediatric PROMIS-25 questionnaire into Chichewa, Malawi’s national language, which was the first Pediatric PROMIS translation and validation into a Bantu language for use in SSA.20 The Pediatric PROMIS-25 is a short form composed of 25 questions assessing mental, physical, and social components of HRQoL. We measured HRQoL among pediatric lymphoma patients using the Chichewa Pediatric PROMIS-25 instrument at diagnosis, and found our patients had poor HRQoL at diagnosis compared to the PROMIS pediatric reference population of children with cancer in the United States.20 We extend our prior observations to describe longitudinal changes in HRQoL from diagnosis through active treatment and follow-up, to demonstrate the feasibility of using PROs in SSA, and to explore if PROMIS measures can be predictive of survival.