OBJECTIVES

Health-related quality of life (HRQoL) is an important outcome in cancer care and research, but such data from sub-Saharan Africa are scant. We translated and validated the Pediatric Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric-25 questionnaire for use in Malawi.

METHODS

We administered the PROMIS Pediatric-25 at baseline, mid-treatment, treatment completion, and follow-up among children treated for lymphoma at a national teaching hospital in Lilongwe. Domain scores were transformed to PROMIS T-scores (mean=50, sd=10). Differences in follow-up and baseline values (Δ) were calculated and compared to published minimally important difference (MID) estimates of Δ=3 points. Increased Mobility and Peer Relationship scores (+Δ) reflect improved functioning and reduced symptom scores (-Δ) reflect improve symptom burden.

RESULTS

Eighty-one questionnaires were completed at diagnosis, 41 at mid-treatment, 24 at treatment completion, and 25 at follow-up. At baseline, 57 (70%) were male, median age was 11 (IQR 9-13), and 50 (62%) reported Pain Intensity ≥8. Median baseline T-scores were 33 in Mobility, 64 in Anxiety, 63 in Depressive Symptoms, 63 in Fatigue, 52 in Peer Relationships, and 57 in Pain Interference. Mobility, Anxiety, Depressive Symptoms, and Pain Interference improved during treatment, but seemed to worsen at treatment completion. At follow-up, 23 (92%) reported Pain Interference ≤1. Substantial improvements in HRQoL are evidenced by Δ of +24 in Mobility, -28 in Anxiety, -25 in Depressive Symptoms, -28 in Fatigue, +9 in Peer Relationships, and -20 in Pain Interference.

CONCLUSIONS

Despite poor HRQoL at baseline, improvements in all measured domains exceeded accepted MID thresholds. This suggests treatment led to meaningful improvements in HRQoL among pediatric lymphoma patients in Malawi, but data are limited by high mortality and could possibly reflect a survivor effect. Incorporating serial HRQoL assessments in emerging cancer care and research programs in sub-Saharan Africa should be a regional priority, similar to current efforts in high-income countries.