Background: Globally, over 400,000 children are diagnosed with cancer each year, with hematologic malignancies being the most common diagnosis. However, there is a 60% survival gap between high income and low to middle income countries. Causes of this disparity are multifactorial and require comprehensive capacity development to improve outcomes. In 2014, a twinning program was started between Duke University and Bugando Medical Centre (BMC) in Mwanza Tanzania, focused on the development of treatment capacity for pediatric hematologic malignancies. We report on the program development and impact on outcomes for leukemia. Methods: Key stakeholder interviews were completed at BMC to identify areas for capacity development. A Duke University pediatric hematology/oncology faculty member spends 6 months per year on site to provide training and clinical care. Capacity development was completed through a step-wise approach based on identified needs, with one new area of focus per year. Outcome evaluation includes 1-year overall survival by diagnosis and year. Results: Stakeholder identified needs included development of a patient registry for monitoring, reducing cost of care, and improving provider knowledge about pediatric cancer. In 2014 the partnership established a cancer registry for outcome monitoring, and provided medical and laboratory training on the resource adapted diagnostic and treatment protocols for hematologic malignancies. In 2015, partnerships with local non-profit organizations provided chemotherapy and diagnostic testing at no cost to the patients. In 2016, the focus was on providing social support through the use of a patient navigation program and provision of local housing during treatment; in 2017 formalized treatment collaboration between BMC and the Tanzanian National Pediatric Hospital (MNH) was established. Additional local non-governmental support allowed for the transfer of patients between hospitals and care coordination. New pediatric cancer diagnoses at BMC increased from 100 in 2014 to 170 in 2018. From 2014-2018, leukemia represented 5-17 % of total cases, and lymphomas 20-30%. 1-year overall survival for ALL was 0% prior to 2016, and an average of 56% for 2016-2018. AML 1-yr OS remained 0% over the 5-year period. CML 1-yr OS increased from 0% in 2014-2015 to 25% in 2016-2018. From 2017-2018, 38% of patients diagnosed at BMC received national care coordination with 13% of these patients receiving part of their treatment plan at MNH. Discussion Despite increased training and reduced treatment costs, social support through patient navigation and a structured treatment collaboration were critical to improved outcomes for children with hematologic malignancies. These should be a priority for the development of future pediatric cancer programs in low resource settings. Additional focus on myeloid malignancies is needed to identify potential areas for outcome improvement. Disclosures No relevant conflicts of interest to declare.
Background The pediatric patient-reported outcomes version of the common terminology criteria for adverse event measure was developed and validated for use in pediatric cancer clinical trials to better capture the symptom experiences through direct self-report. The study aim was to develop and validate a Swahili language version of the patient-reported outcomes version of the common terminology criteria for adverse event measure. Methods The pediatric version of 15 core symptom adverse events, and the corresponding questions, were selected from the patient-reported outcomes version of the common terminology criteria for adverse event library, then forward and back translated into Swahili by bilingual translators. The translated items were further refined using concurrent cognitive interviewing. Each round of interviews included five children, ages 8–17 years-old, receiving cancer therapy at Bugando Medical Centre, the cancer referral hospital for Northwest Tanzania, and continued until at least 80% of participants understood the question. Results Three rounds of cognitive interviews were completed involving 13 patients and 5 caregivers. Among patients, 50% of questions (19/38) were fully comprehended after the first interview round. Two Adverse Events (anxiety and peripheral neuropathy) were the most difficult for participants to understand, associated with education level and experience. Goal comprehension was achieved after three rounds of interviews with no further revisions required. All parents in the first cognitive interview group comprehended the survey, with no additional revisions. Conclusion A Swahili patient-reported outcomes version of the common terminology criteria for adverse event was effective in eliciting patient-reported Adverse Events related to cancer treatment, with good comprehension for children aged 8–17 years. This survey is important to incorporate patient self-reporting of symptomatic toxicities and is an effective tool to increase capacity for pediatric cancer clinical trials throughout East Africa, further reducing global disparities in cancer care.
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