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.