Project Details

Establishing a Registry & Assessing Treatment Abandonment in South African Pediatric Cancer Patients

Christina Hanna, MD, MPH, MSCE

Summary

BACKGROUND: There is an unacceptable inequality gap between outcomes of childhood cancers in high-income countries and LMICs where curative pediatric cancer treatment is available, but treatment abandonment (TxA) rates are high and contribute significantly to poor long-term outcomes. GAP: TxA is a major cause of therapeutic failure in LMICs with some estimates attributing 50-60% of treatment failure to TxA. The reasons why some families abandon treatment while others do not are poorly understood. No study to date has systematically quantified the TxA rate and the attributable risk factors associated with TxA in South Africa. Like many programs in LMIC settings, the Baragwanath Pediatric Oncology Unit (BPOU) team has recognized that without an electronic patient registry, it is challenging to track patient outcomes and factors associated with success and failure. HYPOTHESIS: We will implement the SJCARES Pediatric Cancer Registry at BPOU, to quantify the proportion of patients abandoning care in this population and reasons for abandonment when known or suspected, and to identify which patients are at highest risk of TxA. We hypothesize that TxA will be higher among non-citizens of South Africa than citizens and higher among families without paternal involvement than those with paternal involvement. Additionally, we aim to clarify the drivers of TxA through interviews of parents identified through the newly created registry. Through these interviews, we hypothesize that new potential treatment adherence intervention targets will be elicited. METHODS: The proposed project is a mixed-methods retrospective cohort study evaluating patient outcomes and qualitative analysis of key stakeholder interviews in this South African cohort. RESULTS: Pending. IMPACT: By quantifying reasons for treatment abandonment and qualifying the reasons behind parental abandonment of care, we hope to be able to risk stratify families at “high risk” for abandonment in order to provide appropriately targeted supports. At the end of this two-year project, we plan to test targeted interventions through a hybrid implementation effectiveness trial aimed at curbing TxA rates with the goal of improving survival of children with cancer in LMICs.