The Pediatric Advanced Cancer Experience (PACE): Measuring Quality of End-of-Life Care for Children with Cancer

项目总结 尽管几十年来儿童癌症的治愈率有所提高，但癌症仍然是最主要的 儿童非意外死亡的原因。然而，没有现有的质量标准来定义最佳的结束时间 为癌症儿童提供的生活护理(EOLC)。缺乏EOLC标准导致医疗保健利用率高 适用于患有晚期、无法治愈的癌症的儿童，以及差异很大的姑息治疗服务。对于患有以下疾病的成年人 癌症，高质量的EOLC至少在一定程度上是由减少使用密集医疗保健的措施定义的 资源，例如避免在生命的最后几周住院，并迅速转诊到临终关怀处。在……里面 相比之下，高质量的EOLC对于癌症儿童的属性之前还没有被阐明。至 为了解决这一知识差距，本提案的总体目标是优先考虑以家庭为中心的质量 EOLC的措施，并开创互补的方法，以评估儿童的护理质量 晚期癌症。具体目标是：(1)建立EOLC质量措施的优先列表，从 儿童癌症患者父母的观点；(2)描述儿童死亡的EOLC流程措施 在电子健康记录中使用自然语言处理；以及(3)开发和试验 《儿科晚期癌症体验》(PACE)问卷前瞻性评价儿童癌症护理质量 患有晚期癌症的儿童。这些目标的实现将为第一个多中心、多目标、多目标的发展奠定基础。 癌症儿童临终关怀质量的模式评估。Ananth博士研究的长期目标是 计划是建立一个平台，系统地衡量、报告和激励高质量的EOLC 帮助癌症儿童提供目标一致的护理服务。通过提议的研究，Ananth博士 旨在推进测量儿童癌症EOLC质量的科学。Ananth博士得到了一位 优秀的导师团队和科学咨询委员会，拥有丰富的专业知识，横跨患者- 报告结果、基于人工智能的研究技术和儿科姑息治疗 调查。Ananth博士将在以患者为中心的质量测量、自然语言等方面进行正式培训 处理、问卷设计和验证，同时培养多中心的领导技能 财团。总的来说，这份提案和职业发展计划中的研究将为她做好充分的准备 一个独立的职业生涯，专注于提高晚期、无法治愈的癌症儿童的护理质量。

PROJECT SUMMARY Although cure rates for childhood cancer have increased over several decades, cancer remains the leading cause of non-accidental death in children. Yet, there are no existing quality measures to define optimal end-of- life care (EOLC) for children with cancer. A lack of standards for EOLC contributes to high healthcare utilization for children with advanced, incurable cancer, as well as widely variable palliative care provision. For adults with cancer, high quality EOLC is defined at least in part by measures to reduce use of intensive healthcare resources, such as avoidance of hospital stays in the last weeks of life and prompt referral to hospice. In contrast, attributes of high quality EOLC for children with cancer have not been previously elucidated. To address this gap in knowledge, the overall objectives of this proposal are to prioritize family-centered quality measures for EOLC and to pioneer complementary approaches to assess care quality for children with advanced cancer. Specific aims are to: (1) establish a priority list of EOLC quality measures, from the perspective of parents of children with cancer; (2) characterize EOLC process measures for children who died of cancer, using natural language processing in electronic health records; and (3) develop and pilot the “Pediatric Advanced Cancer Experience” (PACE) questionnaire to prospectively appraise care quality for children with advanced cancer. Completion of these aims will lay the foundation for the first multi-center, multi- modal evaluation of end-of-life care quality in children with cancer. The long term goal of Dr. Ananth’s research program is to build a platform for systematically measuring, reporting, and incentivizing high quality EOLC in children with cancer, facilitating goal-concordant care delivery. Through the proposed research, Dr. Ananth seeks to advance the science of measuring EOLC quality in childhood cancer. Dr. Ananth is supported by an outstanding mentorship team and scientific advisory committee, with substantial expertise spanning patient- reported outcomes, artificial intelligence-based techniques for research, and pediatric palliative care investigation. Dr. Ananth will pursue formal training in patient-centered quality measurement, natural language processing, and questionnaire design and validation, concurrently building skills in leadership of a multi-center consortium. Collectively, the research in this proposal and career development plan will amply prepare her for an independent career focused on enhancing quality of care for children with advanced, incurable cancer.