Abstract
Background: Patient-reported outcomes (PROs) that assess
health-related quality of life (HRQoL) are increasingly important
components of cancer care and research that have been infrequently used
in sub-Saharan Africa (SSA). We aimed to longitudinally measure HRQoL
among pediatric lymphoma patients in Malawi.
Methods: We administered the Chichewa Pediatric
Patient-Reported Outcome Measurement Information System Pediatric
(PROMIS)-25 at diagnosis, active treatment, and follow-up among
pediatric lymphoma patients in Lilongwe, Malawi. Mean scores were
calculated for the six PROMIS-25 HRQoL domains (Mobility, Anxiety,
Depressive Symptoms, Fatigue, Peer Relationships, and Pain Interference)
using the PROMIS scoring manual.
Results: Seventy-five children completed PROMIS-25 surveys at
diagnosis, 35 (47%) during active treatment, and 24 (32%) at
follow-up. The majority of patients died (n= 37, 49%) or were
lost-to-follow-up (n=8, 11%). Most (n=51, 68%) were male, median age
was 10 (IQR 8-12), 48 (66%) presented with advanced Stage III/IV, 61
(81%) were diagnosed with Burkitt lymphoma and 14 (19%) had Hodgkin
lymphoma. At diagnosis, HRQoL was poor across all domains, except for
Peer Relationships. Improvements in HRQoL during active treatment and
follow-up exceeded the minimally important difference. Poor Lanksy
performance status ≤ 70 and Pain Intensity = 10 at diagnosis were
associated with increased mortality risk and worse survival.
Conclusions: Our experience suggests incorporating assessments
of HRQoL via PROs in oncology care is feasible in SSA, can provide
prognostic information, and generates clinically meaningful data to
inform supportive care interventions. Further, PROs offer an opportunity
to include patient voices and prioritize holistic patient-centered care
even in low-resource settings.