Barriers to Hospice and Palliative Care Utilization Among Adolescent and Young Adult Cancer Patients Living in Poverty

生活贫困的青少年和年轻癌症患者使用临终关怀和姑息治疗的障碍

• 批准号: 9187521
• 负责人: JENNIFER W MACK
• 金额: $ 24.74万
• 依托单位: DANA-FARBER CANCER INST
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-15 至 2018-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9187521
• 关键词: Accident and Emergency department; Acute; Adolescent and Young Adult; Adult; African American; Age; California; Cancer Patient; Caregivers; Caring; Cause of Death; Censuses; Cessation of life; Childhood; Collaborations; Data; Decision Making; Development; Doctor of Philosophy; Employment; Enrollment; Ensure; Ethnic Origin; Family; Family Caregiver; Future; Goals; Grant; Health; Hispanics; Home environment; Hospice Care; Hospitals; Immigrant; Income; Inpatients; Institute of Medicine (U.S.); Intervention; Interview; Iowa; Latino; Life; Literature; Location; Malignant Neoplasms; Measures; Medicaid; Medical Records; Modeling; Multi-Institutional Clinical Trial; National Cancer Institute; Nature; Neighborhoods; New York; Nurses; Outcome; Palliative Care; Patients; Pediatric Oncologist; Population; Poverty; Quality of Care; Questionnaires; Race; Research; Research Infrastructure; Research Methodology; Research Personnel; Resources; Risk; Role; Rural; Scientist; Site; Socioeconomic Status; Source; Structure; Supportive care; Testing; Underserved Population; Universities; Vulnerable Populations; Work; Youth; aged; base; care delivery; cohort; end of life; ethnic diversity; experience; family structure; health care disparity; high risk; hospice environment; improved; income insurance; preference; programs; racial and ethnic; racial diversity; response; safety net; socioeconomic disparity; socioeconomics; therapy design

PROJECT SUMMARY Cancer is the leading illness-related cause of death for adolescents and young adults (AYAs) aged 15-39. The vast majority of these young patients die after receiving intensive measures in the last month of life. This may in part be driven by patient and family preferences, a response provoked by young lives ending too soon. However, data from privately insured AYA patients and those publicly insured by Medicaid provide compelling early evidence that poverty is a source of EOL disparities in this vulnerable population. More work is needed to establish the role of poverty in EOL care choices such as hospice and palliative care among AYA patients, and to understand the best models for EOL care delivery for AYA patients with limited socioeconomic resources. The overarching goals of this application are to answer the questions: To what extent is poverty a barrier to hospice and palliative care utilization among AYA patients? What is the optimal model for EOL care delivery for AYA patients living in poverty? The proposed study will draw on the existing robust infrastructure of the Palliative Care Research Cooperative Group (PCRC) and partner with three geographically, racially, and ethnically diverse sites with high rates of urban and rural poverty. The proposed study will: Aim 1: Examine the extent and determinants of socioeconomic disparities in use of hospice and palliative care among AYA patients at the EOL. This project will (a) develop a cohort of AYA decedents from 2013-2016 at 3 PCRC sites; (b) evaluate use of hospice and palliative care as well as location of death among cohort patients using medical records; (c) examine relationships between socioeconomic status, defined by census tract income and insurance data; race/ethnicity; use of hospice and palliative care; and location of death, adjusted for geographic hospice accessibility. Aim 2: Explore caregiver experiences and decision-making about location of EOL care and involvement of hospice and palliative care. This project will (a) identify surviving family caregivers of the cohort’s AYA decedents and (b) conduct semi-structured interviews to evaluate decision-making about use of palliative care and hospice and about location of death, including barriers to hospice/palliative care use and home death. Aim 3: Evaluate quality of care near death among AYA patients as a function of socioeconomic status and hospice and palliative care use. Investigators will use a structured questionnaire-based interview among surviving family caregivers to evaluate the quality of care near death as a function of hospice and palliative care use; socioeconomic status, defined by income, wealth, and employment data; family structure; and age. AYA patients are at risk for high use of intensive measures near death, and those living in poverty appear to be especially vulnerable to suboptimal supportive care at the EOL. This study will evaluate the nature and determinants of hospice and palliative care use among AYA patients living in poverty, as critical preliminary data for interventions designed to improve EOL care delivery in this young population.

项目摘要 癌症是15-39岁青少年和年轻人（AYAs）的主要疾病相关死亡原因。的 绝大多数年轻患者在生命的最后一个月接受强化治疗后死亡。这可能 部分原因是病人和家庭的偏好，这是年轻生命过早结束所引起的反应。 然而，来自私人保险的AYA患者和公共医疗保险的患者的数据提供了令人信服的证据。 早期证据表明，贫困是这一弱势群体终末生活差距的根源。需要做更多的工作来 确定贫困在临终关怀选择中的作用，如AYA患者的临终关怀和姑息治疗，以及 了解为社会经济资源有限的AYA患者提供终末期护理的最佳模式。 本应用程序的总体目标是回答以下问题：贫困在多大程度上是实现 安养院与安宁疗护服务之利用？针对以下情况提供EOL护理的最佳模式是什么 AYA患者生活在贫困中？拟议的研究将利用现有的强大的基础设施， 护理研究合作小组（PCRC）和合作伙伴与三个地理，种族和民族多样化 城市和农村贫困率高的地区。拟议的研究将： 目的1：检查临终关怀和姑息治疗使用中的社会经济差异的程度和决定因素 AYA患者中，该项目将（a）从2013年至2016年开发一组AYA死者， PCRC研究中心;（B）评价临终关怀和姑息治疗的使用以及队列患者的死亡位置 使用医疗记录;（c）检查人口普查区定义的社会经济地位之间的关系 收入和保险数据;种族/民族;临终关怀和姑息治疗的使用;以及死亡地点，调整后 临终关怀的地理可及性。 目的2：探讨护理人员的经验和决策有关的位置，终末期护理和参与 临终关怀和姑息治疗。该项目将（a）确定该队列的AYA的幸存家庭照顾者 死者和（B）进行半结构化访谈，以评估有关使用姑息治疗的决策 和临终关怀以及死亡地点，包括使用临终关怀/姑息治疗和在家死亡的障碍。 目的3：评估AYA患者临终护理质量，作为社会经济地位的函数， 临终关怀和姑息治疗使用。调查人员将使用结构化的基于问卷的访谈， 幸存的家庭照顾者，以评估临终关怀和姑息治疗的护理质量 护理使用;社会经济地位，由收入，财富和就业数据定义;家庭结构;和年龄。 AYA患者在接近死亡时有高度使用强化措施的风险，而那些生活在贫困中的人似乎 尤其容易在EOL时接受次优的支持性治疗。这项研究将评估的性质和 在贫困的AYA患者中使用临终关怀和姑息治疗的决定因素， 旨在改善这一年轻人群中终末期护理服务的干预措施的数据。