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

项目摘要 尽管儿童癌症的治愈率在过去几十年中有所提高，但癌症仍然是儿童癌症的主要病因。 儿童非意外死亡的原因。然而，没有现有的质量措施来定义最佳的结束- 癌症儿童的生活护理（EOLC）。缺乏EOLC标准导致医疗保健利用率高 为患有晚期、无法治愈的癌症的儿童提供的姑息治疗，以及各种各样的姑息治疗。治疗成人 在癌症中，高质量的EOLC至少部分地通过减少使用强化医疗保健的措施来定义 在生命的最后几周避免住院和及时转诊到临终关怀机构。在 相反，先前尚未阐明用于患有癌症的儿童的高质量EOLC的属性。到 为了弥补这一知识差距，本提案的总体目标是优先考虑以家庭为中心的质量 采取措施，并开创补充方法，评估患有 晚期癌症具体目标是：（1）建立平等机会法律委员会质量措施的优先清单， 癌症儿童父母的观点;（2）描述死亡儿童的EOLC过程措施 在电子健康记录中使用自然语言处理;以及（3）开发和试点 “儿科晚期癌症经验”（PACE）问卷，用于前瞻性评估 患有晚期癌症的儿童这些目标的完成，将为我国第一个多中心、多中心、 癌症儿童临终关怀质量的模式评价Ananth博士研究的长期目标是 该计划旨在建立一个平台，用于系统地衡量、报告和激励高质量的EOLC， 癌症儿童，促进目标一致的护理提供。通过这项研究，Ananth博士 旨在推进测量儿童癌症EOLC质量的科学。Ananth博士由一位 优秀的导师团队和科学咨询委员会，具有丰富的专业知识，涵盖患者- 报告的结果，基于人工智能的研究技术和儿科姑息治疗 调查Ananth博士将接受以患者为中心的质量测量、自然语言 加工、问卷设计与验证，同时构建多中心的领导技能 财团总的来说，本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，专注于提高护理质量的儿童与先进的，不可治愈的癌症。

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.