The Experience of Cancer Related Financial Hardship Among Individuals with Chronic Myeloid Leukemia in the Rural Southeast

东南部农村地区慢性粒细胞白血病患者与癌症相关的经济困难的经历

• 批准号: 10751899
• 负责人: Stephanie M. Lee
• 金额: $ 4.77万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-01 至 2025-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10751899
• 关键词: Address; Affect; Age; Area; Award; Cancer Patient; Cancer Survivor; Caring; Chronic; Chronic Myeloid Leukemia; Clinical; Clinical Trials; Code; Coping Behavior; County; Data; Diagnostic; Disparity population; Distress; Education; Employment; Ethnic Population; Face; Fellowship; Female; Financial Hardship; Gender; Health; Health Insurance; Health Services; Health care facility; Healthcare; Hematopoietic Neoplasms; Individual; Inequity; Infrastructure; Insurance Coverage; Intervention; Interview; Life Expectancy; Link; Literature; Longevity; Low income; Malignant Neoplasms; Measures; Medical; Medical Care Team; National Institute of Nursing Research; Nurses; Oncology; Outcome; Participant; Patients; Perception; Persons; Pharmaceutical Preparations; Pharmacists; Population; Populations at Risk; Provider; Quality of life; Recommendation; Reporting; Research; Resources; Risk; Risk Factors; Risk Reduction; Rural; Rural Community; Rural Population; Services; Social Workers; Strategic Planning; Stress; Structure; System; Time; Training; Travel; Tyrosine Kinase Inhibitor; Underinsured; Uninsured; Uninsured Medical Expense; cancer care; cancer diagnosis; cancer risk; care costs; career; cost; distrust; experience; financial toxicity; health equity; health inequalities; high risk population; improved; leukemia treatment; literacy; low health literacy; low socioeconomic status; medication nonadherence; member; mortality; poor health outcome; psychologic; racial minority population; recruit; response; rural area; rural healthcare; rural patients; social health determinants; sociodemographics; therapy development; treatment duration

PROJECT SUMMARY Almost one-third of all oncology patients experience financial hardship (FH) related to their cancer care costs. People who experience FH have worse health outcomes, early mortality, increased stress, and decreased quality of life (QOL). Cancer patients living in rural areas are disproportionately affected by FH due to structural and individual level social determinants of health (SDOH) that are associated with living in a rural area, and more cancer survivors in rural areas report FH than their urban counterparts. However, little is known about the unique experience of FH for rural populations. The cost and the chronicity of Chronic Myeloid Leukemia (CML) treatment generates an ideal group to study to better understand the experience of FH. Tyrosine Kinase Inhibitors (TKIs) have incredibly extended life expectancy of CML patients, but these drugs can be extremely costly and usually are taken indefinitely. This results in risk for FH, nonadherence, and potential poor health outcomes. Further exploration of the experience of FH is needed to inform rural specific interventions to reduce the risk of FH and health inequities for this population. The purpose of this project is to explore the experience of FH for people with CML who live in rural areas of the Southeast. This project will also explore healthcare team member perceptions of the FH experience for rural CML patients. Information from both patients and healthcare team members supporting rural patients (such as nurses, pharmacists, financial navigators, and social workers) is needed to better identify current practices, gaps in care, and to inform interventions to reduce FH and health inequities for rural populations. A qualitative descriptive approach will be used to elicit deep description of experiences and perceptions. Approximately 25 participants with CML who are taking a TKI, living in a rural southeastern 4+ Rural-Urban Continuum Code county, and experiencing FH as measured by the Comprehensive Score for Financial Toxicity (COST), and approximately 10 healthcare team members who care for rural CML patients in the Southeast will be recruited. Data will be collected by semi-structured in- depth interviews. The first aim for this study is to explore the experience of FH in people with CML who live in rural areas by a) describing the impact of cancer care costs on material conditions, psychological responses, and coping behaviors related to financial hardship and b) exploring unique aspects of living in a rural area as they relate to financial hardship of cancer care. The second aim for this study is to explore healthcare staff perceptions of the FH experience for CML patients who live in rural areas by a) describing how structural and individual level risk factors impact FH for the rural CML population and b) describe strategies and resources currently available in clinical settings, areas of need to relieve FH, and recommend intervention strategies to address FH in rural areas. This study will address a gap in the literature for an at-risk population that is challenged by the costs of cancer care while providing evidence that will lead to rural specific interventions to reduce the risk of FH and improve health outcomes and QOL for rural cancer patients.

项目摘要 几乎三分之一的肿瘤患者经历了与癌症护理费用相关的经济困难（FH）。 经历FH的人有更糟糕的健康结果，早期死亡，压力增加， 生活质量（QOL）。生活在农村地区的癌症患者由于结构性疾病而不成比例地受到FH的影响。 和与生活在农村地区有关的个人健康社会决定因素，以及 更多的癌症幸存者在农村地区报告FH比他们的城市同行。然而，人们对此知之甚少。 FH为农村人口提供的独特经验。慢性粒细胞白血病（CML）的治疗费用与慢性化 治疗产生了一个理想的研究组，以更好地了解FH的经验。酪氨酸激酶 抑制剂（TKI）令人难以置信地延长了CML患者的预期寿命，但这些药物可能非常难以治疗。 价格昂贵，通常无限期使用。这会导致FH风险、不依从性和潜在的健康状况不良 结果。需要进一步探索FH的经验，为农村的具体干预措施提供信息，以减少 该人群的FH风险和健康不公平。这个项目的目的是探索 对于居住在东南部农村地区的CML患者，该项目还将探索医疗保健 团队成员对农村CML患者FH经验的看法。来自患者和 支持农村患者的医疗保健团队成员（如护士，药剂师，财务导航员， 社会工作者），以更好地确定目前的做法，护理差距，并告知干预措施， 减少农村人口的FH和健康不平等。将采用定性描述方法， 对经验和感知的深刻描述。大约有25名CML患者正在服用 TKI，居住在东南部农村4+城乡连续体代码县，并根据测量结果经历FH 财务毒性综合评分（COST），以及大约10名医疗团队成员 将招募照顾东南部农村CML患者的人。数据将通过半结构化的 深度访谈本研究的第一个目的是探讨FH在生活在慢性粒细胞白血病患者中的经验， a）描述癌症护理费用对物质条件，心理反应， 和应对行为有关的经济困难和B）探索独特的方面，生活在农村地区， 他们与癌症治疗的经济困难有关。本研究的第二个目的是探索医疗保健人员 对生活在农村地区的CML患者FH经历的看法，a）描述结构和 个体水平的风险因素影响农村CML人群的FH，B）描述策略和资源 目前在临床环境中可用，需要缓解FH的领域，并建议干预策略， 解决农村地区的FH问题。这项研究将解决文献中关于高危人群的空白， 受到癌症护理费用的挑战，同时提供证据，将导致农村的具体干预措施， 降低FH的风险，改善农村癌症患者的健康结局和生活质量。