Expectations for Pediatric Cancer Treatment (EXPECT): A Family-Centered Intervention to Prepare Parents for Pediatric Leukemia Therapy

对儿科癌症治疗的期望 (EXPECT)：以家庭为中心的干预措施，帮助家长为儿科白血病治疗做好准备

• 批准号: 10021023
• 负责人: Katie A. Greenzang
• 金额: $ 15.19万
• 依托单位: DANA-FARBER CANCER INST
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-19 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10021023
• 关键词: Acute; Acute Lymphocytic Leukemia; Address; Adopted; Caring; Characteristics; Child; Child Care; Childhood Acute Lymphocytic Leukemia; Childhood Cancer Treatment; Childhood Leukemia; Clinical; Clinical Trials; Communication; Complex; Consent Forms; Dana-Farber Cancer Institute; Data; Decision Making; Development; Diagnosis; Disease; Early treatment; Emotional; Family; Feedback; Future; Genomics; Glare; Goals; Health; Health Communication; Individual; Information Centers; Informed Consent; Intervention; Interview; Knowledge; Late Effects; Learning; Long-Term Survivors; Malignant Childhood Neoplasm; Malignant Neoplasms; Measures; Medical; Mentorship; Methodology; Modeling; Multi-Institutional Clinical Trial; Multicenter Trials; Newly Diagnosed; Outcome; Parents; Patients; Pediatric Oncology; Phase III Clinical Trials; Preparation; Provider; Quality of life; Randomized Controlled Trials; Research; Research Infrastructure; Research Methodology; Research Personnel; Risk; Risk stratification; Seasons; Site; Survival Rate; Survivors; System; Testing; Time; Training Activity; Treatment Protocols; Treatment Side Effects; Work; acute toxicity; base; cancer diagnosis; cancer therapy; career; career development; chemotherapeutic agent; chemotherapy; cognitive interview; design; expectation; experience; health literacy; implementation science; improved; individualized medicine; innovation; mathematical ability; multidisciplinary; multimodality; novel; novel strategies; optimal treatments; outcome forecast; personalized medicine; pilot trial; prevent; prototype; randomized trial; response; side effect; skills; standard of care; survivorship; therapy development; treatment effect; treatment strategy; tumor; web site

PROJECT SUMMARY/ABSTRACT Though more than 80% of children with cancer will go on to be long-term survivors, most experience both acute toxicities and late effects of therapy. Despite providers' attempts to convey information about what to expect from treatment in the short- and long-term, numerous gaps in parental understanding remain. Most parents do not have an accurate understanding of their child's prognosis or risk of late effects of treatment, and as a result, many feel poorly prepared for treatment experiences and survivorship. To address these gaps, the proposed project will develop and pilot test Expectations for Pediatric Cancer Treatment (EXPECT), the first family-centered intervention to improve communication and information about pediatric cancer therapy at diagnosis. EXPECT will have two components, written materials summarizing key information about treatment and side effects for use during the informed consent conversation with providers, and a website for parents which will contain more detailed information including videos of actual parents and children describing their treatment experiences. Using stakeholder interviews and iterative feedback, we will develop and refine EXPECT for use in initial informed consent conversations in pediatric acute lymphoblastic leukemia (ALL), the most common malignancy of childhood. We will then test the intervention in 30 treatment conversations in ALL, assessing feasibility and acceptability, and evaluating preliminary outcomes relative to 30 parents who did not receive the intervention. This proposal has the following 3 interrelated and complimentary aims: 1) To determine information needs and optimal strategies for sharing early treatment information through qualitative stakeholder interviews of parents, survivors, and providers. 2) To design and refine a prototype EXPECT using Aim 1 qualitative data and input from a multidisciplinary steering committee with disease and methodologic expertise including parent advisors. 3) To evaluate feasibility, acceptability, and preliminary outcomes of EXPECT in a pilot trial within the current Dana-Farber Cancer Institute (DFCI) ALL Consortium multi- institutional clinical trial. At the conclusion of the proposed study, the resultant intervention, EXPECT, will be ready for testing in a randomized controlled trial (planned R01). Throughout the study, the PI, Dr. Greenzang, will be supported by a seasoned mentorship team and advisory panel with expertise in health communication, intervention development, and implementation science. She will engage in career development and training activities focused on qualitative and quantitative research methods, implementation science, and conduct of multicenter trials to prepare her for a career as an independent investigator, all while pioneering the first patient- and family-centered communication intervention in pediatric oncology. In so doing, she will not only develop an approach to optimally prepare all parents of children with cancer for their children's care during treatment and beyond, but also expand our knowledge of what type of information patients and families desire at the time of cancer diagnosis and how best to transmit that information.

项目摘要/摘要 尽管超过80％的癌症儿童将继续成为长期幸存者，但大多数经历 急性毒性和治疗的后期作用。尽管提供者试图传达有关该什么的信息 在短期和长期的治疗中，预期的是，父母理解中的许多差距仍然存在。最多 父母对孩子的预后或治疗后期影响的风险没有准确的了解， 结果，许多人为治疗经历和生存而感到准备不足。为了解决这些差距， 拟议的项目将开发并试生小儿癌症治疗（Expect）的预期，这是第一个 以家庭为中心的干预措施，以改善有关儿科癌症治疗的沟通和信息 诊断。期望将有两个组件，书面材料总结有关治疗的关键信息 在与提供者的知情同意对话期间使用的副作用以及父母的网站 其中将包含更多详细信息，包括实际的父母和孩子描述他们的视频 治疗经验。使用利益相关者的访谈和迭代反馈，我们将开发和完善 期望在小儿急性淋巴细胞白血病（ALL）中使用初始知情同意对话 最常见的童年恶性肿瘤。然后，我们将测试30个治疗对话中的干预措施， 评估可行性和可接受性，并相对于30个父母评估初步结果 接受干预。该提议具有以下3个相互关联和免费的目的：1） 确定通过定性共享早期治疗信息的信息需求和最佳策略 利益相关者对父母，幸存者和提供者的访谈。 2）设计和完善原型的期望 AIM 1来自疾病和方法论的多学科指导委员会的定性数据和输入 包括家长顾问在内的专业知识。 3）评估可行性，可接受性和初步结果 预计在目前的达纳 - 弗尔伯癌研究所（DFCI）的试点试验中，所有财团 机构临床试验。在拟议的研究结束时，由此产生的干预将是 准备在随机对照试验（计划的R01）中进行测试。在整个研究中，PI，Greenzang博士， 将由经验丰富的指导团队和具有健康传播专业知识的咨询小组的支持， 干预发展和实施科学。她将从事职业发展和培训 侧重于定性和定量研究方法，实施科学和行为的活动 多中心试验为她做好准备，为她作为独立调查员的职业做好准备，同时开创了第一个 小儿肿瘤学中以患者和家庭为中心的交流干预。这样，她不仅会 开发一种方法，以最佳的方式为所有患有癌症儿童的父母做好准备，以便在孩子的照顾下照顾 治疗及其他 在癌症诊断时以及如何最好地传输该信息。