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.