Timely End-of-Life Communication to Parents of Children with Brain Tumors

描述（由申请人提供）：项目摘要/摘要虽然大约90%的儿童诊断为高级别脑肿瘤将在2年内死亡的诊断，许多人接受积极的，徒劳的治疗，负面影响他们的生活质量在EOL。父母负责姑息治疗和临终关怀（PC/EOL）的决定，这些孩子，他们遭受情绪困扰，不确定性的可用选项，决策的遗憾，虚假的希望，重点是治愈，而不是姑息治疗，并与医疗保健提供者的沟通不满。卫生保健提供者确认与这些父母沟通的困难，部分原因是他们无法在治疗过程的早期有效实施沟通策略。卫生保健提供者的国家优先事项是为预后不良的儿童（如被诊断患有高级别脑肿瘤的儿童）启动有关PC/EOL的早期和富有同情心的沟通。关于预后和高级护理计划的沟通对于使父母能够为他们的孩子做出关于PC/EOL的困难决定至关重要。这项单组研究旨在完善和试点测试PC/EOL沟通干预，名为沟通计划：从早期到生命结束（COMPHENTS）。COMPLENT旨在在常规诊所访视中提供，其特征为：（a）医生-护士（MD/RN）团队PC/EOL沟通方法;（B）书面决策图和父母资源表，说明治疗和PC/EOL选项;以及（c）MD/RN团队根据其沟通方式和父母的信息需求量身定制的希望维持和不放弃信息。本研究包括两个阶段。第一阶段，将利用PC/EOL专家和丧亲父母顾问的反馈制定标准化方案和培训程序。在第二阶段，将由24名家长和3个MD/RN团队评估COMPANY的可接受性和接受性。此外，我们将评估父母的结果，关于COMPLENT对以下方面的影响：（a）信息需求，情感需求/资源，MD/RN信息的评估，以及随着时间的推移对症状管理的评估;以及（B）父母的痛苦，不确定性，决策后悔，希望，对MD/RN沟通的满意度，以及随着时间的推移的提前护理计划。这项研究的结果涉及NIH的优先事项：1）服务不足的人群（即，脑肿瘤患儿的父母）; 2）对预后不良患儿的父母早期整合PC/EOL沟通的伦理关注不足; 3）改善医生、护士和家长之间关于PC/EOL的沟通;以及4）改变医疗保健实践的潜力。公共卫生相关性：有一个孩子被诊断患有癌症，预后不良是一个高度紧张的情况下，其中父母需要作出非常困难的决定照顾。这项研究可以帮助医疗保健提供者学习如何以敏感的方式提供及时的信息，以便父母做出关于开始和/或结束治疗的决定，以及先进的护理计划。

DESCRIPTION (provided by applicant): Project Summary/Abstract Although approximately 90% of children diagnosed high grade brain tumors will die within 2 years of diagnosis, many receive aggressive, futile treatments that negatively influence their quality of life at EOL. Parents are responsible for palliative care and end of life care (PC/EOL) decisions for these children, and they suffer from emotional distress, uncertainty about available options, decisional regret, false hope that focuses on cure rather than palliation, and dissatisfaction with health care provider communication. Health care providers confirm difficulties in communicating with these parents, partly because of their inability to effectively implement communication strategies early in the treatment trajectory. A national priority for health care providers is to initiate early and compassionate communication about PC/EOL for children with a poor prognosis, such as those who are diagnosed with a high-grade brain tumor. Communication about prognosis and advanced care planning is critical to empowering parents to make difficult decisions about PC/EOL for their children. This single-group study aims to refine and pilot test a PC/EOL communication intervention titled, Communication Plan: Early through End of Life (COMPLETE). COMPLETE is designed to be delivered within routine clinic visits and features: (a) a physician-nurse (MD/RN) team approach to PC/EOL communication; (b) written decision maps and parent resource forms indicating both treatment and PC/EOL options; and (c) hope- sustaining and non-abandonment messages tailored by the MD/RN team to their communication style and the parents' need for information. This study includes two phases. Phase I, the standardized protocol and training procedures will be developed, using PC/EOL-expert- and bereaved-parent consultants' feedback. In Phase II, acceptability and receptivity of the COMPLETE will be evaluated by 24 parents and 3 MD/RN teams. Also, we will evaluate parental outcomes regarding the COMPLETE's influence on: (a) information needs, emotional needs/resources, appraisal of MD/RN information, and appraisal of symptom management over time; and (b) parental distress, uncertainty, decision regret, hope, satisfaction with MD/RN communication, and advance care planning over time. Findings from this study address NIH priorities related to: 1) an underserved population (i.e., parents of children with brain tumors); 2) an under-examined ethical concern about early integration of PC/EOL communication for parents of children with poor prognosis; 3) improved communication about PC/EOL among physicians, nurses, and parents; and 4) the potential for changing health care practice. PUBLIC HEALTH RELEVANCE: Having a child diagnosed with a cancer that has a poor prognosis is a highly stressful situation and one in which parents need to make very difficult decisions about care. This study may help health care providers learn ways to provide timely information in sensitive ways in order for parents to make decisions regarding starting and/or ending treatments, and advanced care planning.