Beyond Efficacy, Toxicity, and Cost: Patients Define Cancer Care Value in the United States

Abstract

Per-capita health-care costs in the United States outpace those of all other countries. Oncology care is particularly expensive, with costs that have nearly doubled over the past twenty years. Cancer care costs are expected to continue to grow exponentially and comprise a considerable proportion of overall health spending costs. While there have been some “blockbuster” or “game changing” treatments, many others offer seemingly minimal benefits. As such, there has been a heightened focus on the concept of cancer care “value,” with multiple organizations promulgating value frameworks designed to assess the perceived value of medications derived from various health economics perspectives. Yet, value is an elusive target, and there is not consensus regarding the dimensions that should be included in such assessments. Value frameworks have the potential to impact patient access to care, yet it is unclear to what extent patient preferences, values, and goals have been incorporated into the value assessments. This study explores how cancer patients and survivors define the concept of “value” in cancer care and if those definitions align with current value frameworks and assessments. This research study was conducted through primary data collection and sought to describe and clarify experiences (such as receiving a cancer diagnosis, engaging in treatment decision making, and moving forward throughout survivorship) as they have unfolded in the lives of cancer patients and survivors. Findings will be used to inform the future direction of value assessments and ultimately, policies that impact the lives of cancer patients and their families.