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

摘要：在每年新增的40万人口中，中低收入国家占85%以上， 确诊的儿科癌症病例低收入国家的存活率为5-25%，而高收入国家为80 （HIC）。造成这种差异的最大因素是放弃治疗。许多社会，卫生系统， 和个人层面的障碍影响放弃治疗，包括护理人员对癌症的知识不足 及其治疗、社会规范、低感知行为自我控制获得癌症护理、成本和有限 支持性基础设施。在Bugando医疗中心（BMC），三个儿童癌症转诊医院之一， 坦桑尼亚，放弃治疗率为40%，2年总生存率为20%。2014年，BMC和 杜克建立了合作能力发展和研究伙伴关系， 针对低支持性护理基础设施和成本的干预措施，提供免费的患者住房， 导航计划和化疗，对家庭来说是免费的，这减少了放弃治疗， 40%到23%。然而，虽然护理人员教育是标准的HIC，实施以前设计的 针对护理人员知识、态度和自我控制感的干预措施一直具有挑战性， 人力资源有限，社区识字率低于50%。迫切需要创新 教育战略，以解决这一障碍，完成治疗。数字健康策略，如视频或 画外音可以为提供者主导的教育提供一种重要的替代模式，但尚未进行评估 用于LMIC环境或其对治疗的影响。这支多学科的国际团队此前 开发了mNavigator， 一个基于平板电脑的数字病例管理系统，记录人口统计学和结局 数据，并根据提供者输入的临床信息提供量身定制的治疗指导。R21/R33 该提案旨在利用这一成熟的技术来评估两个 数字化教育战略，以提高 照顾者对他们孩子的癌症诊断和治疗的知识：1）多媒体教育模块 在诊所平板电脑上访问，以及（2）直接发送到护理人员电话的有针对性的教育短信。在 在R21阶段，我们寻求数字化和文化上适应教育媒体，并评估护理人员对 开发内容。在R33阶段，我们将使用析因研究设计来评估它们的影响， 关于放弃治疗的标准教育。干预发展将由我们强大的父母指导 和利益攸关方咨询委员会，并利用实施科学原则促进最终用户参与， 不仅有助于我们理解在儿科数字健康教育的背景下， 癌症是如何工作的拟议的坦桑尼亚主导的数字媒体改编和每年坦桑尼亚的童年 癌症顾问委员会会议将提供关于使用mHealth应用程序的培训机会， 讨论未来的合作研究，并就扩大规模和传播提供指导， 国家，以确保持续的mHealth研究机会远远超出了目前的建议。

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.