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

摘要：每年新增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%。 (HICs)。造成这种差异的最大单一因素是放弃治疗。许多社会、卫生系统、 个人水平的障碍影响治疗放弃，包括照顾者对癌症的低知识 而其治疗、社会规范、低感知行为自我控制对获得癌症治疗的成本和有限 配套的基础设施。在布干多医疗中心(BMC)，这是全国三家儿童癌症转诊医院之一 坦桑尼亚，放弃治疗的比率为40%，2年总存活率为20%。2014年，BMC和 杜克大学建立了合作能力开发和研究伙伴关系，并制定了几项 旨在降低支持性医疗基础设施和成本的干预措施，提供免费的患者住房，患者 导航计划，以及对家庭免费的化疗，减少了从 40%到23%。然而，尽管照顾者教育是HIC的标准，但实施之前设计的 针对照顾者的知识、态度和自我控制的干预措施一直具有挑战性，原因是 人力资源限制和社区识字率为50%。迫切需要创新 教育战略，以解决这一障碍，完成治疗。数字健康战略，如视频或 画外音可以为提供商主导的教育提供一种重要的替代方式，但尚未得到评估 用于LMIC环境或其对治疗的影响。这个多学科的国际团队之前 开发了mNavigator， 基于平板电脑的数字病例管理系统，可记录人口统计和结果 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。这款R21/R33 一份提案寻求利用这项成熟的技术来评估两个 改善数字化教育的策略 照顾者关于孩子癌症诊断和治疗的知识：1)多媒体教育模块 通过临床平板电脑访问和(2)直接发送到照顾者手机的目标教育文本消息。在……里面 在R21阶段，我们寻求从数字和文化上适应教育媒体，并评估照顾者对 开发的内容。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化教育。干预发展将在我们强大的父母的指导下进行 和利益相关者咨询委员会，并使用实施科学原则促进最终用户参与，以 不仅有助于我们理解在儿科数字健康教育的背景下什么是有效的 癌症，但它是如何工作的。拟议的坦桑尼亚人领导数字媒体改编和坦桑尼亚年度童年 癌症顾问董事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，并就在 国家将确保持续的移动健康研究机会远远超出目前的提议。

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.