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

项目摘要/摘要 虽然超过80%的癌症儿童将继续长期存活，但大多数都经历了这两种情况 治疗的急性毒性和后遗症。尽管供应商试图传达关于 从短期和长期的治疗来看，父母之间的理解仍然存在许多差距。多数 父母对孩子的预后或治疗后遗症的风险没有准确的了解，以及 因此，许多人对治疗经历和生存感到准备不足。为了解决这些差距， 拟议的项目将制定和试行儿科癌症治疗(Expect)的预期，这是第一个 以家庭为中心的干预措施，以改善儿童癌症治疗的沟通和信息，请访问 诊断。Expect将由两部分组成，即总结有关治疗的关键信息的书面材料 在与提供者的知情同意对话中使用的副作用，以及为父母提供的网站 它将包含更详细的信息，包括实际父母和孩子描述他们的 治疗经验。使用利益相关者访谈和迭代反馈，我们将开发和改进 除了在儿童急性淋巴细胞白血病(ALL)的初始知情同意对话中使用外， 儿童时期最常见的恶性肿瘤。然后我们将在总共30个治疗对话中测试干预， 评估可行性和可接受性，并评估与30名没有这样做的父母的初步结果 接受干预。这项建议有以下3个相互关联和相辅相成的目标：1) 通过定性的方法确定信息需求和共享早期治疗信息的最佳策略 利益相关者对父母、幸存者和提供者的采访。2)设计和改进原型，期望使用 目标1定性数据和来自疾病和方法学多学科指导委员会的投入 专业知识，包括家长顾问。3)评估以下项目的可行性、可接受性和初步结果 预计在目前的Dana-Farber癌症研究所(DFCI)内的试点试验中，所有联盟都将 机构临床试验。在拟议的研究结束时，由此产生的干预措施预计将是 准备在随机对照试验中进行测试(计划中的R01)。在整个研究过程中，私家侦探格林赞博士， 将由一个经验丰富的导师团队和咨询小组提供支持，他们在健康传播方面具有专业知识， 干预发展和实施科学。她将从事职业发展和培训 活动的重点是定性和定量研究方法、实施科学和开展 多中心试验，为她作为一名独立调查员的职业生涯做准备，同时开创了第一个 儿科肿瘤学中以患者和家庭为中心的沟通干预。这样做，她不仅将 制定一种方法，使所有癌症儿童的父母在治疗期间为他们的孩子做好最佳准备 治疗和其他方面，但也扩大了我们对患者和家属希望获得的信息类型的了解 在癌症诊断的时候，以及如何最好地传递这一信息。

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.