Pediatric Cancer Interdisciplinary Team Training for Regoaling CARE Discussions

 描述(由申请人提供)：我们如何改善难治性晚期癌症患者的护理，同情并有效地将他们从疾病指导治疗过渡到姑息治疗？我们建议研究跨学科的儿科肿瘤学团队重新定位目标的方式，从提供有治疗意图的治疗转变为承认无法治愈，而是建议患者和父母寻求治疗，目的是在患者的余生中尽量减少症状和最大限度地提高生活质量。我们这样做是基于这样一个前提(部分基于已发表的研究结果以及我们丰富的临床经验)，即这些跨学科团队中的每个成员通常不会以协调的方式发生这种重新定位过程，导致向儿科患者及其父母(或监护人)传递混合的信息，这反过来又抑制了患者和父母的重新定位过程。我们将使用定量和人种学方法的混合进行这项研究，并将在培训几个跨学科团队参与结构化对话的框架内进行，这些对话将有助于在出现关于患者的新的不良诊断或并发症信息时，在诊断时(如一致致命的脑瘤的诊断)、癌症复发或主要并发症发生时，或在考虑登记进入第一阶段试验时可获得的信息。正如我们在对患有癌症和其他危及生命的疾病的儿科患者的父母决策的研究中发现的那样，重新定位目标是一种认知、情感和 关系过程。我们开发的关于重新确定目标的理论框架为如何组织对话以促进重新评估和重新确定目标提供了一个概念性模型。在这项提案中，我们不是将重新瞄准的框架应用于父母(或患者)，而是将其应用于跨学科团队成员内部需要发生的变化，以及他们彼此之间的互动，以促进团队重新瞄准的过程。我们对肿瘤团队目标的关注是对促进晚期癌症患者使用姑息治疗的另外两种方法的补充，即培训临床医生与患者对话，以及将姑息治疗咨询嵌入护理过程中。

 DESCRIPTION (provided by applicant): How can we improve the care of patients with intractably advancing terminal cancer, compassionately and effectively transitioning them from disease-directed therapy to palliative care? We propose to study the ways in which interdisciplinary pediatric oncology teams "regoal," shifting from providing treatment with a curative intent to acknowledging that cure cannot be attained and instead counseling patients and parents to pursue treatments that aim to minimize symptoms and maximize quality of life during the remaining lifetime of the patient. We do so guided by the premise (based in part on published research findings as well as our extensive clinical experience) that this regoaling process often does not occur in a coordinated manner for every member within these interdisciplinary teams, resulting in the delivery of mixed messages to pediatric patients and their parents (or guardians), which in turn inhibits the process of regoaling for the patients and parents. We will perform this study using a mixture of quantitative and ethnographic methods, and will do so within the framework of training several interdisciplinary teams to engage in structured conversations that will facilitate regoaling when new adverse diagnostic or complication information regarding patients arises, information that may be available at the time of diagnosis (such as the diagnosis of a uniformly fatal brain tumor), at the time of a cancer relapse or the development of a major complication, or when contemplating enrollment into a phase 1 trial. Regoaling, as we have found in our studies of parental decision-making regarding pediatric patients with cancer and other life-threatening illnesses, is a cognitive, emotional, and relational process. The theoretical framework we have developed regarding regoaling provides a conceptual model for how to structure conversations to facilitate reassessment and regoaling. In this proposal, we are applying the regoaling framework not to parents (or patients) but rather to the changes that need to occur within interdisciplinary team members, and their interactions with each other, to facilitate the team's process of regoaling. Our focus on oncology team regoaling complements two other approaches that facilitate the use of palliative care by patients with advanced cancer, namely training clinicians to have conversations with patients, and embedding palliative care consultations into the care processes.