Pediatric lymphoma patients in Malawi present with poor health-related
quality of life at diagnosis, and improve throughout treatment and
follow-up across all Pediatric PROMIS-25 domains.
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.