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

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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.