Patient Administrative Burden in Cancer Care Delivery

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PROJECT SUMMARY/ABSTRACT The US health care system leads the world in administrative complexity and its associated costs. Research on administrative costs has primarily focused on costs to the health care system and rarely includes patients, though patients often perform a lot of administrative work, meaning the time, effort, and stress of navigating the health system to obtain, pay for, and coordinate care. Cancer is a complex and often high-acuity condition with persistent disparities in health outcomes, making cancer care delivery a priority setting for assessing patient administrative burdens and identifying solutions. This program of research harnesses multiple methods to define, measure, and describe the impact of patient administrative burden in cancer care delivery on quality and care outcomes including oral anticancer agent adherence and guideline-recommended supportive care. This early K99/R00 will establish Michael Anne Kyle, PhD, RN as an independent investigator focused on improving the quality and value of cancer care delivery by reducing nonfinancial costs. Training goals in advanced survey and psychometric methods and cancer care delivery will support Dr. Kyle’s success in her research aims and transition to independence. An outstanding team of mentors will guide her training and career development. The K99 phase focuses on defining patient administrative burden in cancer care delivery and developing a survey instrument to measure it. It will engage patients or patient proxies in focus groups elucidating the patient-facing nonclinical tasks involved in managing cancer care (Aim 1a). Qualitative insights will inform the development and validation of a novel survey instrument measuring patient administrative burden and its psychometric properties (Aim 1b). The R00 phase, will administer the validated patient administrative burden survey to patients with cancer across a large NCI Comprehensive Cancer Center (Aim 2a). It will then link patient survey data with data on practice characteristics to examine the relationship between organizational characteristics and administrative burden. (Aim 2b). Finally, it will link the survey with patient-level utilization data burden to examine the relationship between administrative burden and cancer care quality, including adherence to oral anticancer agents and adherence to guideline-recommended supportive care (Aim 2c). Together, these results will enable the measurement and diagnosis of administrative burden across cancer care settings and produce evidence identifying and motivating actionable organizational or policy targets for clinical leaders and policymakers.