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

利用数字健康解决方案减少癌症儿童的学习和功能差异

• 批准号: 10659161
• 负责人: Sunita K Patel
• 金额: $ 79.02万
• 依托单位: BECKMAN RESEARCH INSTITUTE/CITY OF HOPE
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-07-05 至 2027-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10659161
• 关键词: Acute Lymphocytic Leukemia; Address; Adult; Award; Brain; California; Cancer Burden; Cancer Center; Cancer Survivor; Cancer Survivorship; Caring; Central Nervous System; Child; Child Behavior; Childhood Brain Neoplasm; Childhood Leukemia; Cities; Development; Diagnosis; Disparity; E-learning; Education; Educational Intervention; Educational process of instructing; Eligibility Determination; Enrollment; Environment; Family; Feedback; Goals; Habits; Health; Health Disparities Research; Health Insurance Portability and Accountability Act; Health Technology; Impairment; Intervention; Language; Late Effects; Latino; Learning; Link; Long-Term Care; Los Angeles; Lymphoblastic lymphoma; Malignant Childhood Neoplasm; Medical center; Monitor; Multimedia; Neurocognition; Neurocognitive; Neuropsychological Tests; Online Systems; Outcome; Parents; Patient Self-Report; Patients; Pediatric Hospitals; Pediatric Oncologist; Performance; Persons; Phase; Population; Randomized, Controlled Trials; Recommendation; Research; Risk; Schedule; Schools; Shapes; Site; Socioeconomic Status; Special Education; Survivors; Technology; Test Result; Testing; Time; Toxic effect; Training; Travel; Treatment Side Effects; Underserved Population; Unemployment; Videoconferencing; adverse outcome; behavioral outcome; cancer therapy; care delivery; childhood cancer survivor; cognitive function; comparative efficacy; design; digital health; eHealth; educational atmosphere; effective therapy; effectiveness evaluation; experience; follow-up; functional outcomes; health care delivery; health disparity; health related quality of life; high risk; improved; innovation; insight; intervention program; learning strategy; leukemia; leukemia/lymphoma; low socioeconomic status; medically underserved population; meetings; online resource; outcome disparities; parental involvement; pilot trial; prevent; programs; psychosocial; randomized, clinical trials; routine care; skills; social; sociodemographic group; standard care; stress management; success; telehealth; tool; treatment as usual; uptake; web site

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.

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 对患有白血病和淋巴母细胞淋巴瘤 (LL) 的儿童的癌症治疗也具有长期效果。 对发育中的大脑产生毒性作用，称为神经认知迟发效应，会影响儿童的 然而，这些问题往往没有得到解决。 认识到家庭的影响，导致白血病和 LL 幸存者的医疗服务不足。 针对幸存者结果的因素，我们设计了家长指导的培训干预（高强度干预 计划，HIP），向父母传授有关大脑发育和神经认知后期影响的知识； 改善孩子行为和认知功能的工具提供了建立更好学习的技巧； 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。 在讲英语和西班牙语的家庭中进行的 HIP 试点试验证明了其有效性，但也揭示了关键的问题 成功的障碍，包括数字医疗技术带来的旅行时间和日程安排挑战。 旨在提高医疗保健服务的效率、质量和便利性的变革性解决方案。 “电子健康”尚未应用于以家长为主导的干预措施，以改善儿童的教育成果。 因此，我们建议在以下环境中测试我们的英语/西班牙语干预措施 (HIP-eHealth) 的新电子健康版本： 来自加利福尼亚州 4 个地点的 180 名家长/儿童的随机临床试验解决了其余问题。 我们将消除 HIP 获取的障碍，并纳入家长在我们早期试验中建议的改进措施。 通过托管的符合 HIPAA 要求的研究网站，从单一中心站点（希望之城）提供 HIP-eHealth 用于 HIP 会议的 Zoom 视频会议；补充多媒体内容链接； 屡获殊荣的 IXL 学习环境和自动提醒功能； 其他进步包括简化的 4 会话计划、增强的用户分析。 我们相信 HIP-eHealth 将产生更大的成果。 与模仿常规护理的低强度计划 (LIP) 相比，儿童和家长的结果有所改善 提供给儿科脑肿瘤的幸存者（即，一次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 (2) 评估 HIP-eHealth 对儿童癌症幸存者学习和学校表现的有效性； HIP-eHealth 对父母“亲学”功效的有效性； (3) 调查其影响程度； 父母的效率和/或孩子对在线学习活动的使用与孩子的变化有关 学校表现；(4) 评估影响家长完成干预能力的因素。 预计这项研究将有助于形成一种可扩展且有效的疗法，并且可以轻松整合到标准护理中。