Patients’ Understanding of Oncology Clinical Endpoints: Environmental Scan and Focus Groups

Abstract

Background: Understanding treatment options is important for patients with cancer and their caregivers. This may be difficult, however, because oncology treatments are often approved based on complex clinical endpoints. The study aimed to explore lay understanding of oncology clinical endpoints by assessing the definitions of clinical endpoints available online and gathering qualitative focus group data on cancer survivors' and the general public's understanding of clinical endpoints. Methods: We conducted an environmental scan to find Web sites accessible by a general audience that defined three clinical endpoints: overall survival, progression‐free survival, and response rate. Next, we conducted a series of eight focus groups across the U.S. with cancer survivors (n = 36) and general population adults (n = 36). Results: We found several online resources defining each endpoint; however, many of the definitions we identified used technical language that may not be easily understood by patients and caregivers. Few focus group participants were familiar with the technical terms for these endpoints. When presented with the endpoint terms and definitions, participants had misconceptions about treatment efficacy. Specifically, they tended to expect that all endpoints were a variation on living longer. Conclusion: The results point to the need for more patient‐friendly definitions of clinical endpoints developed with input from the general public and from patients with cancer. Implications for Practice: As the number of oncology prescription drug approvals and the advertising of those drugs to consumers increase, it is timely and critical to understand how to discuss treatment benefits with patients. Patient‐friendly definitions of common clinical endpoints, such as overall survival and progression‐free survival, would help health care providers describe treatment benefits to patients. This research provides evidence regarding patients' understanding of these endpoints and suggests definitions for additional research. This represents a first step in creating evidence‐based patient‐friendly language to describe clinical endpoints. Understanding treatment options can be difficult for patients with cancer and for their caregivers. This article explores lay understanding of oncology clinical endpoints, assessing definitions and focus group data on cancer survivors' and the general public's understanding of clinical endpoints.