Leveraging Digital Health Solutions to Reduce Learning and Functional Disparities in Children with Cancer

项目摘要/摘要 随着儿童癌症幸存者人数的增加，长期治疗相关副作用的影响 也在生长。儿童白血病和淋巴母细胞性淋巴瘤(LL)的癌症治疗持续时间长 对发育中的大脑的毒性影响，称为神经认知迟发效应，它会影响儿童的 作为成年人获得独立的学习、功能和能力。然而，这些问题往往得不到治疗。 在白血病和LL幸存者中，造成了医疗服务不足的人口。认识到家庭暴力的影响 影响生存结局的因素，我们设计了以父母为导向的训练干预(高强度干预 HIP)，该计划向父母传授大脑发育和神经认知迟发效应；培训他们 改善孩子行为和认知功能的工具；提供建立更好学习的提示 环境和有效的学习习惯；并帮助他们管理自己和孩子的压力。 在说英语和西班牙语的家庭中进行的髋关节试点试验显示了有效性，但也揭示了关键 成功的障碍，包括旅行时间和日程安排方面的挑战。数字健康技术提供 具有变革性的解决方案，可提高医疗保健服务的效率、质量和便利性。然而， “电子健康”尚未应用于以家长为导向的干预，以改善儿童的教育结果。 因此，我们建议测试英语/西班牙语干预(HIP-eHealth)的新eHealth版本 来自加利福尼亚州4个地点的180对父母/子女的随机临床试验。Hip-eHealth解决了剩余的问题 这是一种髋关节接触障碍，并纳入了父母在我们早期试验中建议的改进措施。我们会 从单一中心站点(希望之城)通过HIPAA兼容的研究网站提供HIP-eHealth HIP会议的缩放视频会议；数字化研究内容；补充多媒体内容；链接到 屡获殊荣的IXL学习环境；游戏化功能和自动提醒以增加 参与度；以及强大的用户分析。其他改进包括简化的4节课计划，增强的 助推器阶段，更大程度地包容儿童。我们假设HIP-eHealth将产生更大的 与模仿常规护理的低强度计划(LIP)相比，改善儿童和父母的结局 提供给儿童脑肿瘤幸存者(即，讨论儿童神经心理学的一次会议 测试结果，并为最佳学习提供建议)。我们的研究目的是：(1)评估 HIP-eHealth对儿童癌症幸存者学习和学习成绩的影响；(2)评价 HIP-eHealth对家长“助学”效能的影响；(3)调查 父母的效能感和/或儿童对在线学习活动的使用与儿童的 (4)评估影响家长完成干预的能力的因素。我们 预期这项研究将有助于形成一种可扩展的有效疗法，易于整合到标准护理中。

PROJECT SUMMARY/ABSTRACT As the population of childhood cancer survivors grows, the impact of long-term treatment-related side effects also grows. Cancer treatments for children with leukemia and lymphoblastic lymphoma (LL) have long-lasting toxic effects on the developing brain, known as neurocognitive late effects, which can impact the children’s learning, function, and ability to achieve independence as adults. However, these problems are often untreated in leukemia and LL survivors, creating a medically underserved population. Recognizing the impact of familial factors on survivor outcomes, we designed a parent-directed training intervention (the high-intensity intervention program, HIP), which teaches parents about brain development and neurocognitive late effects; trains them on tools to improve their child’s behavior and cognitive functioning; provides tips for establishing better learning environments and effective study habits; and helps them to manage stress for themselves and their children. Pilot trials of the HIP in English- and Spanish-speaking families demonstrated efficacy but also revealed critical barriers to success, including travel time and scheduling challenges. Digital health technologies offer transformative solutions to improve the efficiency, quality, and convenience of healthcare delivery. However, “eHealth” has not been applied to a parent-directed intervention to improve educational outcomes for children. Therefore, we propose to test a new eHealth version of our English/Spanish intervention (HIP-eHealth) in a randomized clinical trial of 180 parent/child dyads from 4 sites in California. HIP-eHealth addresses the remaining barriers to HIP access and incorporates improvements recommended by parents in our earlier trials. We will deliver HIP-eHealth from a single central site (City of Hope) through a HIPAA-compliant study website that hosts Zoom videoconferencing for HIP sessions; digitized study content; supplemental multimedia content; links to the award-winning IXL learning environment; gamification features and automated reminders to increase engagement; and robust user analytics. Other advances include a streamlined 4-session program, an enhanced booster phase, and greater inclusion of the children. We hypothesize that HIP-eHealth will produce greater improvements in child and parent outcomes than a lower-intensity program (LIP) that mimics the usual care provided to survivors of pediatric brain tumors (i.e., a single meeting to discuss the child’s neuropsychological testing results and provide recommendations for optimal learning). Our study aims to: (1) Evaluate the effectiveness of HIP-eHealth on the learning and school performance of pediatric cancer survivors; (2) Evaluate the effectiveness of HIP-eHealth on the “pro-learning” efficacy of their parents; (3) Investigate the extent to which the parents’ efficacy and/or children’s use of online learning activities is associated with changes in the children’s school performance; and (4) Assess factors that impact the parents’ ability to complete the intervention. We anticipate this study will help shape a scalable and effective therapy that is easily integrated into standard care.