Economic Strain and Resilience in Cancer Patients: Assessing Patient-Reported Measures of the Burdens of Treatment

项目摘要/摘要 在这项为期5年的建议中，我们寻求全面了解经济压力和 癌症患者的复原力，使用以患者为中心的方法。我们的目标是制定和试行以下措施 患者报告的经济压力和恢复力是新的健康相关生活质量(HRQOL)结果。我们 将经济紧张定义为由以下因素造成的物质和非物质经济资源负担 癌症治疗；以及经济韧性，作为患者可能获得的内在物质和非物质资源 为应对经济压力而依赖。我们的结果将支持一项由调查人员发起的研究，以评估 国家癌症纵向队列中的经济压力和恢复力以及相关的健康结果 病人。这个项目将推进我的长期研究目标，推进以患者为中心的研究 了解和提高癌症护理价值的框架。这项研究将为 支持癌症治疗的共同决策，促进提高生活质量(QOL)的治疗， 并缩小使用高价值医疗保健的差距。 在获奖期间，我计划在关键内容上结合实地研究、正式指导和教学 完成我的目标的领域。我的多学科指导团队包括经验丰富的教授 M.D.Anderson(MDA)，具有互补的专业知识，并致力于支持我的研究和事业 发展规划。沃尔克博士是癌症患者偏好和定性研究方面的国家专家 应用于以病人为中心的研究和决策的价值观。他有20年的辅导经验 初级调查员走向独立。彼得森博士是患者报告结果调查的核心主任 和人口研究(PROSPR)中心。史博士是一位研究比较研究的健康经济学家。 治疗选择的有效性和对癌症结果和成本的影响。佐丹诺博士和哈恩博士订婚 在卫生服务研究方面，我将帮助我发展成为比较领域的学术思想领袖 有效的肿瘤学研究。我的统计学导师是谢特博士，他是一位 行为研究和以患者为中心的癌症结果研究。为了实现我的研究计划和职业目标， 我将在定性和混合方法、心理测量学和卫生经济学方面发展新的专业知识。这 专业知识与我之前在分析人口数据的量化方法方面的培训相结合。这个强大的 两者的结合最终将为我提供一个独特的机会，让我产生关于癌症价值的新信息 从患者的角度进行治疗，并影响他们的生活质量和健康结果。 每年有100多万美国成年人被诊断为癌症，一旦确诊，患者就会一起 他们的医生需要做出治疗决定。有两个概念已经成为优先考虑的问题 纳入这一治疗决策过程。第一要务是增加高价值治疗 决策-具体地说，在选择治疗时考虑经济成本和疗效。 第二个优先事项是增加以患者为中心的治疗决策，参与患者的价值观， 偏好和预期的权衡，以便为患者个人做出最好的决定。我们的 该项目寻求在这两个优先事项的交叉点解决这两个优先事项，在那里仍然存在重大的研究需求。 这项研究具有创新性，因为它发展了一种以患者为中心的新理解，即 癌症治疗，将患者的声音纳入到这种理解中。结果可以用来前瞻性地 制定治疗战略，将经济压力降至最低，为提高经济韧性的干预措施提供信息， 并前瞻性地确定最脆弱的患者面临与健康相关的不良后果的风险。 我计划实现以下目标：目标1)确定经济压力和韧性的关键方面 使用患者访谈和定性分析对癌症患者进行评估；目标2)开发一种新的、经过验证的 测量患者报告的经济压力和恢复力的工具，使用调查发展和 心理测量学研究方法；目的3)试用我们的工具，建立其可行性 在前瞻性研究中的应用。我们的研究团队和环境非常适合实现这些目标。 我们的团队结合了行为科学(定性和心理测量学研究)和健康服务方面的专家 (比较有效性研究)。我们正在合作招募在MDA(一家学者)接受治疗的患者 综合癌症中心)和LBJ医院肿瘤学(休斯顿的一家初级社会安全网医院) 以确保样本的多样性，并包括对低社会经济水平患者的充分代表性 地位和医疗保健方面的劣势。 这项研究有可能影响公众健康，并具有很强的临床相关性，以增强 以患者为导向，以价值为基础的治疗选择。从社会和公共卫生的角度，选择 高价值的癌症治疗是对日益紧张的医疗资源的有意义的回应 需要管理1800亿美元的癌症护理成本。从患者的角度出发，选择高价值的 治疗也是必不可少的，因为众所周知，癌症的个人成本具有毁灭性的影响， 导致许多患者经历破产、心理痛苦和不利的健康后果。 通过这个奖项，我将有机会发展这个研究项目，并发展先进的技能 成为肿瘤学健康服务研究领域的独立研究人员。

PROJECT SUMMARY/ABSTRACT In this 5-year proposal, we seek to acquire a comprehensive understanding of economic strain and resilience in cancer patients, using a patient-centered approach. Our goal is to develop and pilot measures of patient-reported economic strain and resilience as novel health related quality of life (HRQOL) outcomes. We define economic strain as the material and non-material economic resource burden exerted by the stressor of cancer treatment; and economic resilience as the intrinsic material and non-material resources a patient may rely on in response to economic strain. Our results will support an investigator-initiated study to assess economic strain and resilience, and related health outcomes, in a national longitudinal cohort of cancer patients. This project will advance my long-term research goal, to advance a patient-centered research framework for understanding and enhancing value in cancer care. This research will provide knowledge to support shared decision-making about cancer treatment, promote treatments that improve quality of life (QOL), and reduce disparities in use of high-value healthcare. During the award period, I plan to combine field research, formal mentorship, and didactics in key content areas to accomplish my goals. My multidisciplinary mentorship team includes highly experienced professors at M. D. Anderson (MDA) with complementary expertise and committed support for my research and career development plan. Dr. Volk is a national expert on qualitative studies of cancer patients’ preferences and values applied to patient-oriented research and decision-making. He has 20 years of experience mentoring junior investigators to independence. Dr. Peterson is Core Director of the Patient-Reported Outcomes, Survey & Population Research (PROSPR) center at MDA. Dr. Shih is a health economist studying comparative effectiveness and impact of treatment choices on cancer outcomes and cost. Drs. Giordano and Hahn engage in health services research and will help me develop as an academic thought-leader in comparative effectiveness oncology research. My statistical mentor is Dr. Shete, an expert in quantitative methods for behavioral and patient-centered cancer outcomes research. To accomplish my research plan and career goals, I will develop new expertise in qualitative and mixed methods, psychometrics, and health economics. This expertise synergizes with my prior training in quantitative approaches to analyze population data. This powerful combination will ultimately offer me the unique opportunity to generate novel information on the value of cancer treatments from the patient perspective and impact their QOL and health outcomes. More than one million US adults receive a cancer diagnosis yearly, and upon diagnosis, patients together with their physicians need to make treatment decisions. Two concepts have emerged as priorities to incorporate into this treatment decision-making process. The first priority is to increase high-value treatment decision-making—specifically, considering the economic cost along with efficacy when selecting a treatment. The second priority is to increase patient-oriented treatment decision-making, engaging a patient's values, preferences, and anticipated tradeoffs in order to make the best decision for the patient as an individual. Our project seeks to address these two priorities at their intersection, where significant research needs remain. This research is innovative as it develops a novel patient-centered understanding of the economic impact of cancer treatment, incorporating patient voices in this understanding. Results can be used to prospectively shape treatment strategies to minimize economic strain, inform interventions to improve economic resilience, and prospectively identify the most vulnerable patients at risk for adverse health-related outcomes. I plan to accomplish the following aims: Aim 1) To identify key dimensions of economic strain and resilience of cancer patients using patient interviews and qualitative analysis; Aim 2) To develop a novel, validated instrument to measure patient-reported economic strain and resilience using survey development and psychometric research methods; and Aim 3) To pilot our instrument, establishing the feasibility of its application in a prospective study. Our research group and environment is uniquely fit to achieve these aims. Our team combines experts in behavioral science (qualitative and psychometric research) and health services (comparative effectiveness research). We are partnering to recruit patients treated at MDA (an academic comprehensive cancer center) and LBJ Hospital Oncology (a primary social safety net hospital in Houston) in order to ensure a diverse sample, and include adequate representation of patients with low socioeconomic status and healthcare disadvantage. This research has the potential to impact public health and have strong clinical relevance for enhancing patient-oriented, value-based treatment selection. From a societal and public health perspective, selecting high-value cancer treatments is a meaningful response to the increasingly strained healthcare resources needed to manage $180 billion in cancer care costs. From the patient's perspective, selecting high-value treatments is also essential, given that the personal cost of cancer is known to have devastating impact, causing numerous patients to experience bankruptcy, psychological distress, and adverse health outcomes. Through this award, I will have the opportunity to grow this research program and develop advanced skills to become an independent grant-funded investigator in oncology health services research.