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.

项目摘要/摘要 随着儿童癌症的存活人数的增长，长期治疗相关的副作用的影响 也成长。白血病和淋巴细胞淋巴瘤（LL）儿童的癌症治疗长期 对发育中的大脑的毒性作用，称为神经认知后期作用，这可能会影响儿童的 学习，功能和成年人独立的能力。但是，这些问题通常未经治疗 在白血病和LL生存中，创造了医学上服务不足的人群。认识到家庭的影响 关于幸存者结果的因素，我们设计了父母指导的训练干预措施（高强度干预 计划，髋关节），教父母有关大脑发育和神经认知后期影响；训练他们 改善孩子的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；并帮助他们为自己和子女管理压力。 英语和西班牙语家庭中臀部的试点试验表现出效率，但也揭示了关键 成功的障碍，包括旅行时间和安排挑战。数字健康技术提供 变革性解决方案，以提高医疗保健提供的效率，质量和便利性。然而， “ EHealth”尚未应用于父母指导的干预措施，以改善儿童的教育成果。 因此，我们建议在一个新的EHealth版本中测试我们的英语/西班牙干预（HIP-EHEADH） 来自加利福尼亚4个地点的180个父母/儿童二元组的随机临床试验。 HIP-EHealth解决了其余的 髋关节访问的障碍并纳入了父母在我们较早的试验中建议的改进。我们将 通过符合HIPAA的研究网站，从一个单个中央网站（希望之城）从一个单个中央站点（希望之城）传递HIP-Ehealth 放大髋关节会议的视频会议；数字化研究内容；补充多媒体含量；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 订婚;和强大的用户分析。其他进步包括简化的4条计划，增强 助推阶段，更大的孩子。我们假设Hip-Ehealth会产生更大的 比模仿通常护理的低强度计划（LIP）的儿童和父母成果的改善 提供给小儿脑肿瘤的存活（即一次讨论儿童神经心理学的会议 测试结果并为最佳学习提供建议）。我们的研究旨在：（1）评估 髋关节健康对小儿癌存活的学习和学校表现的有效性； （2）评估 嘻哈健康对父母“亲学习”有效性的有效性； （3）调查在多大程度上 父母的效率和/或孩子使用在线学习活动与孩子的变化有关 学校表演； （4）评估影响父母完成干预能力的因素。我们 预期这项研究将有助于塑造一种易于纳入标准护理的可扩展疗法。