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

项目概要/摘要 随着儿童癌症幸存者人数的增长，长期治疗相关副作用的影响 也在增长。白血病和淋巴母细胞淋巴瘤（LL）儿童的癌症治疗具有长期的 对发育中的大脑产生毒性作用，称为神经认知晚期效应，这可能会影响儿童的 学习，功能和能力，实现独立作为成年人。然而，这些问题往往得不到处理 在白血病和LL幸存者中，创造了一个医疗服务不足的人群。认识到家庭暴力的影响 影响幸存者结局的因素，我们设计了一个父母指导的训练干预（高强度干预 该项目向父母传授大脑发育和神经认知的后期效应， 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。 在英语和西班牙语家庭中进行的HIP试验证明了疗效，但也揭示了关键的 成功的障碍，包括旅行时间和日程安排的挑战。数字健康技术提供 变革性解决方案，以提高医疗保健服务的效率、质量和便利性。然而，在这方面， “电子保健”尚未应用于家长指导的干预措施，以改善儿童的教育成果。 因此，我们建议在一个社区中测试我们的英语/西班牙语干预（HIP-eHealth）的新电子健康版本。 来自加州4个地点的180对父母/孩子的随机临床试验。HIP-eHealth解决了剩余的 在我们的早期试验中，我们采用了父母建议的改进措施。我们将 通过一个符合HIPAA标准的研究网站，从一个中心站点（City of Hope）提供HIP-eHealth，该网站托管 HIP会话的缩放视频会议;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， 参与度;以及强大的用户分析。其他进步包括精简的4节课程，增强的 助推阶段，以及更多的儿童参与。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， 提供给小儿脑肿瘤的幸存者（即，一个单独的会议来讨论孩子的神经心理学 测试结果并提供最佳学习建议）。我们的研究目的是：（1）评估 HIP-eHealth对儿童癌症幸存者的学习和学校表现的有效性;（2）评估 HIP-eHealth对父母“亲学习”效能的有效性;（3）调查在多大程度上 父母的效能感和/或儿童使用在线学习活动与儿童的 （4）评估影响家长完成干预的能力的因素。我们 预计这项研究将有助于形成一个可扩展的和有效的治疗，很容易整合到标准护理。

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.