Multimedia caregiver education program to improve outcomes for children with cancer in low-resource settings

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ABSTRACT: Each year, low- and middle-income countries (LMICs) account for over 85% of the 400,000 newly diagnosed pediatric cancer cases. Survival rates in LMICs are 5-25% compared to 80% in high-income countries (HICs). The largest single contributor to this disparity is treatment abandonment. Many societal, health system, and individual level barriers impact treatment abandonment, including low caregiver knowledge about cancer and its treatment, social norms, low perceived behavioral self-control to obtain cancer care, cost and limited supportive infrastructure. At Bugando Medical Centre (BMC), one of three childhood cancer referral hospitals in Tanzania, treatment abandonment rates were 40% with a 20% 2-year overall survival rate. In 2014, BMC and Duke formed a collaborative capacity development and research partnership and developed several interventions targeting low supportive care infrastructure and cost, providing free patient housing, a patient navigation program, and chemotherapy at no cost to the families, which reduced treatment abandonment from 40 to 23%. However, while caregiver education is standard in HIC, implementation of previously designed interventions targeting caregiver knowledge, attitudes and perceived self-control have been challenging due to human resource limitations and community literacy rates of <50%. There is an urgent need for innovative education strategies to address this barrier to treatment completion. Digital health strategies such as videos or voice-overs can provide an important alternative modality to provider-led education but have not been evaluated for use in LMIC settings or for their impact on treatment. This multidisciplinary international team previously developed mNavigator, a tablet-based digital case management system that records demographic and outcome data and provides tailored treatment guidance based on provider entered clinical information. This R21/R33 proposal seeks to leverage this established technology to evaluate two digital education strategies to improve caregiver knowledge about their child’s cancer diagnosis and its treatment: 1) multimedia education modules accessed on clinic tablets and (2) targeted education text messages sent directly to the caregiver’s phone. In the R21 phase, we seek to digitally and culturally adapt education media and evaluate caregiver acceptance of developed content. In the R33 phase, we will use a factorial study design to evaluate their impact as compared to standard education on treatment abandonment. Intervention development will be guided by our strong parent and stakeholder advisory board and the use of implementation science principles for end user engagement, to contribute to our understanding of not only what works in the context of digital health education for pediatric cancer but how it works. The proposed Tanzanian led digital media adaptation and annual Tanzanian childhood cancer advisor board meetings will provide opportunities for training on the use of mHealth applications, discussion of future collaborative research, and provide guidance on scale up and dissemination within the country to ensure continued mHealth research opportunities extending well beyond this current proposal.