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岁的青少年和年轻人（AYAS）的主要疾病死亡原因。这 这些年轻患者的绝大多数在生命的最后一个月接受密集措施后死亡。这可能 在某种程度上是由患者和家庭偏好驱动的，这是由年轻生活所证明的，结束得太早。 但是，来自私人保险的AYA患者和医疗补助公开保险的数据提供了引人注目的数据 早期证据表明贫困是这种脆弱人群中EOL差异的根源。需要更多的工作 在AYA患者中确定贫困在EOL护理选择中的作用，例如临终关怀和姑息治疗， 了解具有有限社会经济资源的AYA患者的EOL护理交付最佳模型。 此应用程序的总体目标是回答问题：贫困在多大程度上是障碍的障碍 AYA患者的临终关怀和姑息治疗使用？什么是EOL护理交付的最佳模型 居住在贫困中的Aya患者？拟议的研究将利用姑息治疗的现有强大基础设施 护理研究合作集团（PCRC），并与三个地理，种族和种族多样的合作 城市和粗糙贫困率高的地点。拟议的研究将： 目标1：检查使用临终关怀和姑息治疗的社会经济差异的程度和决定者 在EOL的AYA患者中。该项目将（a）开发一组AYA的队列，从2013 - 2016年第3期决定 PCRC站点； （b）评估临终关怀和姑息治疗的使用以及队列患者的死亡位置 使用病历； （c）由人口普查区定义的社会经济地位之间的研究关系 收入和保险数据；种族/种族；使用临终关怀和姑息治疗；和死亡的位置，调整后 用于地理临终关怀。 目标2：探索有关EOL护理位置和参与的护理人员的经验和决策 临终关怀和姑息治疗。该项目将（a）确定同伙AYA的生存家庭护理人员 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，包括临终关怀/姑息治疗的障碍和家庭死亡。 目标3：评估AYA患者死亡附近的护理质量与社会经济地位的关系和 临终关怀和姑息治疗。调查人员将使用基于结构化问卷调查的访谈 幸存的家庭护理人员评估死亡附近的护理质量，这是临终关怀和姑息治疗的作用 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患者有高度使用密集措施在死亡附近的风险，而生活在贫困中的人似乎是 特别容易受到EOL次优的支持护理的影响。这项研究将评估性质和 确定居住在贫困的AYA患者中的临终关怀和姑息治疗，这是关键的初步 旨在改善这一年轻人群的EOL护理提供的干预措施的数据。