Expanding the Catalog of Patient and Caregiver Out-of-Pocket Costs: A Systematic Literature Review.

Out-of-pocket (OOP) health care expenditures in the United States have increased significantly in the past 5 decades. Most research on OOP costs focuses on expenditures related to insurance and cost-sharing payments or on costs related to specific conditions or settings, and does not capture the full picture of the financial burden on patients and unpaid caregivers. The aim for this systematic literature review was to identify and categorize the multitude of OOP costs to patients and unpaid caregivers, aid in the development of a more comprehensive catalog of OOP costs, and highlight potential gaps in the literature. The authors found that OOP costs are multifarious and underestimated. Across 817 included articles, the authors identified 31 subcategories of OOP costs related to direct medical (eg, insurance premiums), direct nonmedical (eg, transportation), and indirect spending (eg, absenteeism). In addition, 42% of articles studied an expenditure that the authors did not label as "OOP." A holistic and comprehensive catalog of OOP costs can inform future research, interventions, and policies related to financial barriers to health care in the United States to ensure the full range of costs for patients and unpaid caregivers are acknowledged and addressed.

Improving patient-reported measures in oncology: a payer call to action.

Despite rising interest in integrating the patient voice in value-based payment (VBP) models for oncology, barriers persist to implementing patient-reported measures (PRMs), including patient-reported performance measures (PR-PMs). This article describes the landscape of oncology PRMs and PR-PMs, identifies implementation barriers, and recommends solutions for public and private payers to accelerate the appropriate use of PRMs in oncology VBP programs. Our research used a multimethod approach that included a literature review, landscape scan, stakeholder interviews and survey, and a multistakeholder roundtable. The literature review and landscape scan found that limited oncology-specific PR-PMs are available and some are already used in VBP programs. Diverse stakeholder perspectives provided insight into filling current gaps in measurement and removing implementation barriers, such as limited relevance of existing PRMs and PR-PMs for oncology; methodological challenges; patient burden and survey fatigue; and provider burden from resource constraints, competing priorities, and insufficient incentives. Key recommendations include: (a) identify or develop meaningful measures that fill gaps, engaging patients throughout measure and program development and evaluation; (b) design programs that include scientifically sound measures standardized to reduce patient and provider burden while supporting care; and (c) engage providers using a stepwise approach that offers resources and incentives to support implementation. DISCLOSURES: Funding for this project was provided by the National Pharmaceutical Council. Schmidt, Perkins, Riposo, and Patel are employees of Discern Health, a consulting firm with many clients, including government, life sciences, nonprofit, and provider organizations. Valuck is a partner at Discern Health. Westrich is an employee of the National Pharmaceutical Council, an industry-funded health policy research group that is not involved in lobbying or advocacy. Basch reports grants from National Cancer Institute and Patient-Centered Outcomes Research Institute; fees from serving as a consultant on research projects at Memorial Sloan Kettering Cancer Center, Dana-Farber Cancer Institute, and Research Triangle Institute/CMS; and fees from serving as a scientific advisor to CareVive Systems, Sivan Healthcare, Navigating Cancer, and AstraZeneca, outside the submitted work. McClellan reports fees from serving on the boards of Johnson & Johnson and Seer Bio and as an advisor to Cota outside the submitted work; and McClellan is an independent board member on the boards of Cigna and Alignment Healthcare, co-chair of the Guiding Committee for the Health Care Payment Learning and Action Network, and receives fees for serving as an advisor for MITRE, outside the submitted work.