End-of-Life Care for Adolescents and Young Adults with Cancer: An Evaluation of Care and Development of Patient-Centered Quality Measures

项目总结/摘要 本提案响应PA-15 - 324，青少年的生命终结（EOL）和姑息需求， 患有严重疾病的年轻人（AYAs）是美国国立卫生研究院的研究重点。 在美国，患有癌症的AYA每年有70，000例新的癌症诊断，癌症是他们的主要疾病。 导致疾病相关死亡的主要原因。然而，这些患者接受的EOL护理质量并没有得到改善。 系统地定义或测量。此外，现有的终末期护理质量指标是为老年人设计的， 成人和不充分捕获AYA患者值;一组表征高质量EOL护理的指标 因为AYA不存在。这个应用程序的首要目标是回答以下问题： AYA癌症患者的终末期护理质量？什么是以患者为中心的高质量EOL定义 照顾面临绝症的AYA？此应用程序将利用通过Dana提供的独特数据- Farber癌症研究所和癌症研究网络对2500名AYA癌症患者进行了检查 2003年至2017年期间死亡的12至39岁的人，并通过制定一项 一套反映AYA需求的新的EOL护理质量指标。拟议的研究将： 目的1：检查AYA癌症患者的EOL护理经验。我将建立一个团队， 2003年至2017年期间，在我们的三个研究中心之一接受治疗后死亡的2500名AYA癌症患者;（B） 使用电子健康记录和深入的医疗记录审查，以评估终末期护理质量;以及（c） 评估EOL护理的差异来源，包括12 - 24岁患者与 年龄在25 - 39岁之间。 目标2：开发一套反映AYA人群需求的新型EOL护理质量指标。 研究者将（a）对AYA患者及其家属、肿瘤科和 临终关怀护士，以及肿瘤学和临终关怀/姑息医学医生，以开发一套候选人 适用于AYA患者的质量属性;（B）在利益相关者中使用修改后的德尔菲过程， （c）使用结果来指定年龄在12 - 24岁和25 - 39岁的AYA患者的相关和优先领域; 一套新的AYA EOL护理质量指标，使用行政，医疗记录和访谈数据。 目标3：在最近的AYA中使用新开发的指标评价EOL护理的质量 死者研究者将（a）调查幸存的家庭照顾者，并进行额外的重点医疗 对来自父母队列的300例近期AYA死亡者进行记录审查，以根据以下内容评价EOL护理质量 新制定的质量指标;以及（B）比较新指标与现有指标的结果。 本研究将有助于了解AYA患者的EOL护理质量现状， 制定一套质量指标，捕捉AYA患者的护理价值。这项工作将使有效的 评估护理质量和严格评估干预措施，以改善AYA EOL护理服务。

PROJECT SUMMARY/ABSTRACT This proposal responds to PA-15-324, End-of-Life (EOL) and Palliative Needs of Adolescents and Young Adults (AYAs) with Serious Illnesses, a research priority for the National Institutes of Health. AYAs with cancer account for 70,000 new cancer diagnoses in the United States per year, and cancer is their leading disease-related cause of death. However, the quality of EOL care these patients receive has not been systematically defined or measured. In addition, existing measures of EOL care quality were designed for older adults and inadequately capture AYA patient values; a set of measures to characterize high quality EOL care for AYAs does not exist. The overarching goal of this application is to answer the questions: What is the quality of EOL care for AYAs with cancer? What is a patient-centered definition of high quality EOL care for AYAs facing terminal illness? This application will leverage unique data available through Dana- Farber Cancer Institute and the Cancer Research Network to examine care among 2500 AYA cancer patients who died from 2003-2017 between the ages of 12 and 39, and expand on existing measures by developing a novel set of EOL care quality indicators that reflect the needs of AYAs. The proposed study will: Aim 1: Examine EOL care experiences among AYA patients with cancer. We will (a) establish a cohort of 2500 AYA cancer patients who died between 2003 and 2017 after receiving care at one of our three sites; (b) use electronic health records and in-depth medical record review to evaluate EOL care quality; and (c) evaluate sources of variation in EOL care, including differences between patients aged 12-24 years and those aged 25-39 years at death. Aim 2: Develop a novel set of EOL care quality indicators that reflects the needs of the AYA population. The investigators will (a) conduct in-depth interviews with AYA patients and family members, oncology and hospice nurses, and physicians in oncology and hospice/palliative medicine, to develop a set of candidate quality attributes applicable to AYA patients; (b) use a modified Delphi process among stakeholders to hone in on relevant and priority domains for AYA patients aged 12-24 and 25-39 years; and (c) use results to specify a novel set of AYA EOL care quality indicators using administrative, medical record, and interview data. Aim 3: Evaluate the quality of EOL care using newly developed indicators among recent AYA decedents. Investigators will (a) survey surviving family caregivers and perform additional focused medical record review for 300 recent AYA decedents from the parent cohort to evaluate EOL care quality according to newly developed quality indicators; and (b) compare findings from novel versus established indicators. This study will allow an understanding of the current state of EOL care quality among AYA patients and develop a set of quality indicators that capture AYA patient values for care. This work will enable valid assessment of care quality and rigorous evaluation of interventions to improve AYA EOL care delivery.