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

患有癌症的青少年和年轻人的临终关怀：护理评估和以患者为中心的质量措施的制定

• 批准号: 10337069
• 负责人: JENNIFER W MACK
• 金额: $ 60.78万
• 依托单位: DANA-FARBER CANCER INST
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-02-13 至 2024-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10337069
• 关键词: Adolescent and Young Adult; Advance Care Planning; Age; California; Cancer Center; Cancer Patient; Cancer Research Network; Caregivers; Caring; Cause of Death; Cessation of life; Dana-Farber Cancer Institute; Data; Development; Disease; Elderly; Electronic Health Record; Evaluation; Family; Family Caregiver; Family member; Goals; Guidelines; Health; Intervention; Interview; Life; Link; Malignant Neoplasms; Measures; Medical; Medical Records; National Cancer Institute; National Institute of Nursing Research; Oncology; Oncology Nurse; Palliative Care Nursing; Palliative Medicine; Parents; Patient Care; Patients; Persons; Physicians; Population; Process; Provider; Quality Indicator; Quality of Care; Research Personnel; Research Priority; Resources; Risk; Site; Source; Surveys; Symptoms; System; Terminal Disease; To specify; United States; United States National Institutes of Health; Variant; Work; World Health Organization; aged; cancer care; cancer diagnosis; care delivery; cohort; cost; design; end of life; end of life care; experience; health care delivery; health record; hospice environment; improved; interest; medical specialties; neoplasm registry; novel; palliative; patient oriented

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.

项目摘要/摘要 该建议对青少年和 年轻人（AYA）患有严重疾病，是美国国立卫生研究院的研究重点。 AYA患有癌症的AYA每年在美国进行70,000个新的癌症诊断，癌症是他们的 领先的与疾病有关的死亡原因。但是，这些患者获得的EOL护理质量尚未 系统定义或测量。此外，现有的EOL护理质量措施是为较老的 成人并不充分地捕获AYA患者的价值；一组表征高质量EOL护理的措施 因为ayas不存在。此应用程序的总体目标是回答问题：什么是 EOL护理质量为AYA患有癌症吗？什么是以患者为中心的高质量EOL定义 照顾面临绝症的AYA？该应用程序将利用Dana-可用的独特数据 - Farber癌症研究所和癌症研究网络，以检查2500名AYA癌症患者的护理 他于2017年12至39岁之间去世，并通过开发一个 新颖的EOL护理质量指标，这些指标反映了AYA的需求。拟议的研究将： AIM 1：检查AYA癌症患者的EOL护理经验。我们将（a）建立一个队列 2500名AYA癌症患者在我们的三个地点之一接受护理后在2003年至2017年之间去世； （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； （c） 评估EOL护理差异来源，包括12-24岁患者之间的差异 死亡25-39岁。 目标2：开发一组新型的EOL护理质量指标，以反映AYA人群的需求。 调查人员将（a）对AYA患者和家人，肿瘤学和 临终关系护士以及肿瘤学和临终关怀医学的医生，以发展一组候选人 适用于AYA患者的质量属性； （b）使用利益相关者之间的修改后的Delphi流程来磨练 在12-24岁和25-39岁的AYA患者的相关和优先型领域上； （c）使用结果指定 使用行政，病历和访谈数据的新型AYA EOL护理质量指标。 目标3：使用新近开发的指​​标评估EOL护理的质量 死者。调查人员将（a）调查幸存的家庭护理人员并进行其他重点医疗 父母同类队员最近300名AYA死者的记录审查，以根据 新开发的质量指标； （b）比较新颖的指标与已建立的指标的发现。 这项研究将使AYA患者的EOL护理质量的当前状态以及 开发一组质量指标，以捕获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护理提供。

项目成果

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.

• DOI: 10.1001/jamanetworkopen.2021.21888
• 发表时间: 2021-08-02
• 期刊: JAMA network open
• 影响因子: 13.8
• 作者: Mack JW;Fisher L;Kushi L;Chao CR;Vega B;Rodrigues G;Josephs I;Brock KE;Buchanan S;Casperson M;Cooper RM;Fasciano KM;Kolevska T;Lakin JR;Lefebvre A;Schwartz CM;Shalman DM;Wall CB;Wiener L;Altschuler A
• 通讯作者: Altschuler A

Quality Indicators for Adolescents and Young Adults With Advanced Cancer: A Modified Delphi Process With Patients, Family Members, and Clinicians.

患有晚期癌症的青少年和年轻人的质量指标：与患者、家庭成员和临床医生一起改进的德尔菲法。

• DOI: 10.1016/j.jpainsymman.2023.03.005
• 发表时间: 2023
• 期刊: Journal of pain and symptom management
• 影响因子: 4.7
• 作者: Mack,JenniferW;Fisher,Lauren;Khalaj,Andrew;Altschuler,Andrea;Chao,ChunR;Kushi,LawrenceH;Casperson,Mallory;Lakin,JoshuaR;Lefebvre,Anna;Schwartz,CoreyM;Shalman,DovM;Wall,CatherineB;Wiener,Lori
• 通讯作者: Wiener,Lori

Discussions About Goals of Care and Advance Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life.

关于患有癌症接近生命尽头的青少年和年轻人的护理目标和预先护理计划的讨论。

• DOI: 10.1200/jco.23.00641
• 发表时间: 2023
• 期刊: Journal of clinical oncology : official journal of the American Society of Clinical Oncology
• 作者: Mack,JenniferW;Cernik,Colin;Uno,Hajime;Xu,Lanfang;Laurent,CecileA;Fisher,Lauren;Cannizzaro,Nancy;Munneke,Julie;Cooper,RobertM;Lakin,JoshuaR;Schwartz,CoreyM;Casperson,Mallory;Altschuler,Andrea;Wiener,Lori;Kushi,Lawrence;C
• 通讯作者: C

Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer: A Qualitative Study.

• DOI: 10.1001/jamanetworkopen.2023.28153
• 发表时间: 2023-08-01
• 期刊: JAMA network open
• 影响因子: 13.8

What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer.

什么构成了生活质量？

• DOI: 10.6004/jnccn.2023.7067
• 发表时间: 2023
• 期刊: Journal of the National Comprehensive Cancer Network : JNCCN
• 作者: Hinkle,Jane;Wiener,Lori;Altschuler,Andrea;Brock,KatharineE;Casperson,Mallory;Chao,ChunR;Fisher,Lauren;Kushi,LawrenceH;Lakin,JoshuaR;Lefebvre,Anna;Schwartz,CoreyM;Shalman,DovM;Wall,CatherineB;Mack,JenniferW
• 通讯作者: Mack,JenniferW