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

项目摘要/摘要 该建议符合PA-15-324、临终关怀(EOL)和青少年的临终关怀需求 患有严重疾病的青壮年(AYA)，是国家卫生研究院的研究重点。 在美国，每年有70,000例新的癌症诊断为癌症，而癌症是他们的 与疾病相关的主要死因。然而，这些患者接受的EOL护理的质量并不是 系统地定义或测量的。此外，现有的EOL护理质量措施是为老年人设计的 成人和不充分地捕捉Aya患者的价值观；一套表征高质量EOL护理的措施 因为AYAS并不存在。这个应用程序的首要目标是回答以下问题： AYA癌症患者的终生护理质量？什么是以患者为中心的高质量EOL定义 关心面临绝症的AYA？此应用程序将利用通过DANA提供的唯一数据- Farber癌症研究所和癌症研究网络检查2500名Aya癌症患者的护理 他们在2003-2017年间去世，年龄在12岁到39岁之间，并通过制定一项 一套新颖的反映AYA需求的EOL护理质量指标。建议的研究将会： 目的1：探讨AYA癌症患者的生命周期护理经验。我们将(A)建立一个队列 2003年至2017年期间在我们三个地点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来评估EOL护理质量；以及(C) 评估EOL护理的差异来源，包括12-24岁患者和 死亡时年龄为25-39岁。 目标2：制定一套反映Aya人群需求的新的EOL护理质量指标。 调查人员将(A)深入约谈Aya患者及其家属、肿瘤学和 临终关怀护士，以及肿瘤学和临终关怀/姑息医学的医生，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改进的Delphi流程来磨练 12-24岁和25-39岁的Aya患者的相关和优先领域；和(C)使用结果指定 一套新颖的AYA EOL护理质量指标，使用行政、医疗记录和访谈数据。 目的3：使用近期Aya中新开发的指标评估EOL护理的质量 继承人。调查人员将(A)调查幸存的家庭照顾者，并进行额外的重点医疗 对300名最近从父母队列中去世的Aya患者进行记录审查，以评估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。 这项研究将有助于了解Aya患者的EOL护理质量现状和 开发一套质量指标，以捕捉Aya患者的护理价值。这项工作将使有效 评估护理质量和严格评估干预措施，以改善Aya EOL护理交付。

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.