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

项目总结/摘要 虽然超过80%的癌症儿童将继续成为长期幸存者，但大多数人都经历了这两种情况。 急性毒性和治疗的迟发效应。尽管供应商试图传达关于什么是 尽管短期和长期的治疗效果不佳，但父母的理解仍然存在许多差距。最 父母对孩子的预后或治疗的晚期效应风险没有准确的了解， 因此，许多人感到对治疗经历和生存准备不足。为了弥补这些差距， 拟议的项目将开发和试点测试儿童癌症治疗的期望（EXPECT），第一个 以家庭为中心的干预，以改善有关儿科癌症治疗的沟通和信息， 诊断. EXPECT将有两个组成部分，书面材料总结有关治疗的关键信息 和副作用，以便在与提供者进行知情同意对话时使用，并为父母提供一个网站 它将包含更详细的信息，包括真实父母和孩子描述他们的视频。 治疗经验。通过利益相关者访谈和反复反馈，我们将开发和完善 预期用于儿科急性淋巴细胞白血病（ALL）的初始知情同意对话， 最常见的儿童恶性肿瘤然后，我们将在30个ALL治疗对话中测试干预措施， 评估可行性和可接受性，并评估相对于30名父母的初步结果， 接受干预。本建议有以下三个相互关联和相辅相成的目标：1） 确定信息需求和最佳战略，通过定性和定量的方法分享早期治疗信息， 与父母、幸存者和提供者的利益相关者访谈。2)设计和改进原型EXPECT使用 目的1定性数据和输入来自一个多学科指导委员会， 包括家长顾问在内的专业知识。3)评价以下方法的可行性、可接受性和初步结果： 期待在目前Dana-Farber癌症研究所（DFCI）ALL联盟的一项试点试验中， 机构临床试验。在拟议研究结束时，所产生的干预措施EXPECT将是 准备在随机对照试验中进行测试（计划R 01）。在整个研究过程中，PI Greenzang博士， 将得到经验丰富的导师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 活动侧重于定性和定量研究方法，实施科学， 多中心试验，为她作为一名独立研究者的职业生涯做准备，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 制定一种方法，使所有癌症儿童的父母为他们的孩子在治疗期间的护理做好最佳准备。 治疗和超越，而且还扩大了我们的知识，什么类型的信息病人和家属的愿望 以及如何最好地传递这些信息。

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.