Knowledge characterization of newly diagnosed breast cancer patients.

Abstract

e12738 Background: Patient decision making is understudied and seldom focused on those diagnosed with cancer. This NCI-supported knowledge acquisition study sought to characterize patient knowledge of those newly diagnosed with breast cancer and examine how it informs decision making. Methods: We recruited participants in the US, > 18 years, within three months of a breast cancer diagnosis to participate in 1-hour semi-structured interviews on Zoom with compensation. An interview guide was developed to elicit patient knowledge state, as well as acquisition and sources regarding diagnosis and next steps. Interviews were audio-recorded, transcribed, and analyzed using Braun and Clarke’s (2006) thematic analysis of qualitative data. Results: We interviewed 26 female participants with a mean age of 51. Approximately 54% (n = 14), 31% (n = 8), and 4% (n = 1) were White, Black, and Asian, respectively and 4% (n = 1) were Hispanic. Below, we highlight a selection of themes. Diagnosis and next steps: Patients reported inconsistent experiences of receiving their diagnosis. Eighteen patients received a report via MyChart with follow-up communication from a provider (n = 5) on a timeline of hours to days, or not at all. Only some patients reported receipt of an explanation from their provider. Patients often sought clarification through external resources (e.g. Google, Reddit, TikTok, Instagram, Facebook patient communities, survivors in their networks). Four participants used AI to help understand their pathology reports, medical terminology, treatment options, and next steps. Roles of clinical care team: Some patients demonstrated incomplete understanding of the structure of their care team. Half (n = 14) used the term “doctor” to refer to either the primary care provider or oncologist (without clarity to what role). Only a few patients mentioned having a patient navigator and, when prompted, some patients reported that they either did not have one or that they did not know. Second opinion: Some patients did not talk about seeking a second opinion (suggesting they did not), while others reported feeling empowered to do so (n = 9), influenced by their social network and embodied knowledge, yet another reported discomfort associated with doing so. Conclusions: During the diagnostic phase, patients report lack of support in acquiring credible foundational knowledge. Findings suggest that patient-driven knowledge acquisition is an active and iterative process that begins at diagnosis, not at treatment selection. Specifically, patients continuously assess what they know, do not know, and how to fill the gaps. Highlighted by the variability in reported patient experiences in both receiving and seeking information, many report inconsistent support. Implications include that without effective information transmission, patients may not have decision making agency.