Understanding the information-seeking behaviors and office visit communication experiences of patients with breast and prostate cancer: A framework for supporting informed decision-making.

Abstract

A cancer diagnosis often requires patients to navigate complex health information, balancing clinical advice with often-conflicting input from family, friends, and the media. We draw on patients' lived experiences and examine information-seeking behaviors, patient-provider communication, and patient decisions to identify the communication strategies between patients and providers that either support or hinder patients' informed decision-making. We conducted interviews with people diagnosed with breast or prostate cancer at two large health systems in New Jersey and Washington, DC, between November 2024 and February 2025. Interview guides were informed by the Coping in Deliberation (CODE) (Witt et al., 2012). framework and Shared Decision-Making (Elwyn et al., 2012). Interview transcripts were inductively double-coded, and emergent codes were subsequently organized deductively into themes. Themes were refined with input from communication and oncology experts, and organized into a framework to support informed decisions. A total of 9 patients with breast and 10 with prostate cancer participated. We synthesized the experiences of patients who searched for information in nonclinical sources, including information about complementary and alternative cancer therapy (CAM). The developed framework outlines five main themes: "Post-Visit Unmet Patient Needs," "Exposure to Conflicting Information," "Supportive Communication," "Unsupportive Communication," and "Risk of Misinformed Decision Making." The framework builds on the deliberation phase of decision-making and captures how patients seek answers to unmet information needs outside clinical settings, encounter conflicting information, and experience supportive or unsupportive clinical communication as they make medical decisions. While future research is needed to test the relationships proposed in the framework, the framework clarifies how patients seek and navigate information outside the clinical setting and how they experience patient-provider communication as either supportive or unsupportive of informed decision-making.