Conclusion
Children with lymphoma in Malawi present with poor HRQoL at diagnosis
that improves during active treatment and follow-up across all PROMIS-25
domains. The Chichewa Pediatric PROMIS-25 is feasible to administer in
SSA, generates clinically meaningful data that can inform
multidisciplinary supportive care interventions, and may provide useful
prognostic information among pediatric cancer patients. The use of
translated PROMIS-25 surveys in both research and routine clinical care
includes patient voices in decision making, with a focus on mental,
physical, and social HRQoL, and can strengthen holistic patient-centered
oncology care across SSA.
Acknowledgements: We would like to thank the patients and their
families for participating in the project. We are also grateful to the
leadership of Kamuzu Central Hospital, Malawi Ministry of Health, Texas
Children’s Cancer and Hematology Centers Global HOPE Malawi program, UNC
Project-Malawi, UNC Institute for Global Health and Infectious Disease,
and UNC Lineberger Comprehensive Cancer Center for support of this
study.
Funding: This work was supported by National Institute of
Health (NIH) (K01TW011191 [KDW], K01TW009488 [SG] and
U2GPS001965); by NIH National Cancer Institute (NCI) (U54CA190152
[SG], P30CA016086, UM1CA121947 [KDW]), by an NIH National
Institute of General Medical Sciences Award (T32GM086330 [KDW]); and
by an NIH Research Training Grant (D43TW009340 [KDW]) funded by the
NIH Fogarty International Center, National Institute of Neurological
Disorders and Stroke, National Institute of Mental Health, National
Heart, Lung, and Blood Institute, and National Institute of
Environmental Health Sciences.
The funding agencies had no role in study design, data collection, data
analysis, data interpretation, writing of the report, or the decision to
submit it for publication. The content is solely the responsibility of
the authors and does not necessarily represent the official views of the
NIH.
Conflict-of-interest disclosure: The authors declare no
competing financial interests.
Author Contributions: KDW designed the study and provided
oversight and mentorship throughout the project. GKE analyzed and
interpreted the data with assistance from KDW and BBR. GKE and HC wrote
the paper with revisions from KDW, SG, BBR, NO, MH, AMS, AT, GM, EB. AS,
SI, GB conducted PROMIS surveys with participants. KDW, NO, MH, GM, MB
provided clinical care. RS provided program setup and management.