Dr. Evans is a UJMT Fogarty Global Health Fellowship Alumni and a third-year Pediatric Hematology-Oncology fellow at the University of North Carolina. Her UJMT Fogarty project resulted in the implementation of cutting-edge Patient Reported Outcome (PRO) measures in Malawi; ultimately harnessing the voice of vulnerable, and often silenced, patients across the globe. Dr. Evans has both lived and led research abroad, where she learned a tremendous amount regarding regional and cultural barriers and has dedicated her early career toward obtaining a multidisciplinary skill set to provide a much-needed change.
Health-related quality of life (HRQoL) is an increasingly important outcome in cancer care and research, but such data from sub-Saharan Africa (SSA) are limited. In SSA, children and adolescents diagnosed with cancer have unacceptably poor outcomes. These outcomes are in part attributable to high rates of treatment failure, which result from inadequate access to treatment and supportive care.
The aim of this study was to implement and validate the Chichewa-translated Pediatric PRO-CTCAE assessment tool to measure symptomatic treatment-related toxicity among pediatric and adolescent Lymphoma patients in Malawi. We hypothesized that the self-reported Pediatric PRO- CTCAE will more accurately measure symptomatic adverse events compared to traditional physician-reported CTCAE grading. We also hypothesized that Chichewa Pediatric PRO-CTCAE will be a valid and reliable tool to measure symptomatic adverse events.
Dr. Westmoreland (primary mentor), and Dr. Reeve (co-mentor), completed the Chichewa, Malawi’s national language, translation, and validation of the Pediatric PROMIS-25.8 The Chichewa Pediatric PROMIS-25 was then implemented into the Kamuzu Central Hospital (KCH) Lymphoma Study. They found that pediatric lymphoma patients in Malawi have poor HRQoL at diagnosis, which is predictive of mortality. These findings emphasized an urgent need to conduct more comprehensive self-reported assessments. Dr. Westmoreland recently led the Chichewa translation and qualitative validation of the Pediatric PRO-CTCAE for use in Malawi, but implementation and psychometric validation have not yet been initiated, which this study proposes.