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

儿科晚期癌症经验 (PACE)：衡量癌症儿童临终关怀的质量

• 批准号: 10190336
• 负责人: Prasanna J Ananth
• 金额: $ 22.02万
• 依托单位: YALE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-04-01 至 2026-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10190336
• 关键词: Academy; Address; Adult; Advanced Malignant Neoplasm; Advisory Committees; Artificial Intelligence; Award; Bereavement; Caregivers; Caring; Cessation of life; Child; Child Care; Childhood; Clinical; Cognitive; Cohort Studies; Communication; Data; Data Collection; Data Sources; Development Plans; Electronic Health Record; Evaluation; Face; Family; Foundations; Goals; Healthcare; Hospitalization; Incentives; Intubation; Investigation; Knowledge; Leadership; Length of Stay; Libraries; Life; Malignant Childhood Neoplasm; Malignant Neoplasms; Manuals; Measurement; Measures; Medicine; Mentorship; Methods; Minority; Natural Language Processing; Non-accidental; Outcome; Pain; Palliative Care; Parents; Patient Outcomes Assessments; Patients; Procedures; Process; Process Measure; Property; Provider; Psychometrics; Quality of Care; Questionnaire Designs; Questionnaires; Reporting; Research; Research Personnel; Research Technics; Resources; Sampling; Science; Structure; Surveys; Symptoms; Testing; Training; Training Activity; Validation; Work; base; cancer care; care delivery; career; career development; cohort; design; end of life; end of life care; evidence base; experience; experimental study; health care service utilization; hospice environment; improved; multimodality; novel; patient oriented; preference; programs; prospective; skills; tool; trend

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.

项目摘要 尽管儿童癌症的治愈率在数十年中升高，但癌症仍然是领先的 儿童非事故死亡的原因。然而，没有现有的质量措施来定义最佳的结局 癌症儿童的生命护理（EOLC）。 EOLC缺乏标准有助于高度医疗保健利用 适用于患有晚期，无法治愈的癌症以及广泛可变的姑息治疗条款的儿童。适用于成年人 癌症，高质量的EOLC至少部分通过减少强化医疗保健的使用的措施来定义 资源，例如避免住院时间，在生命的最后几周停留，并迅速转介给临终关怀。 对比，以前尚未阐明高质量EOLC对癌症儿童的高质量EOLC属性。到 解决知识中的这一差距，该提案的总体目标是优先考虑以家庭为中心的质量 EOLC的措施和开拓者的完整方法，以评估儿童的护理质量 晚期癌症。具体目的是：（1）从 癌症儿童父母的观点； （2）表征死亡儿童的EOLC过程指标 癌症，在电子健康记录中使用自然语言处理； （3）开发和驾驶 “小儿晚期癌症经验”（PACE）问卷调查，以评估护理质量的 患有晚期癌症的孩子。这些目标的完成将为第一个多中心，多中心奠定基础 对癌症儿童的临终护理质量的模态评估。 Ananth博士研究的长期目标 计划是建立一个用于系统测量，报告和激励高质量EOLC的平台 患有癌症的儿童，支持目标符合护理。通过拟议的研究，Ananth博士 旨在推进衡量儿童癌症EOLC质量的科学。 Ananth博士得到 杰出的Mentalship团队和科学咨询委员会，具有跨越患者的大量专业知识 - 报告的结果，基于人工智能的研究技术以及儿科姑息治疗 投资。 Ananth博士将接受以患者为中心的质量测量，自然语言的正式培训 处理和问卷的设计和验证，同时建立多中心领导的技能 财团。总的来说，该提案和职业发展计划中的研究将充分为她做好准备 独立的职业专注于提高患有晚期，无法治愈的癌症儿童的护理质量。