Experiences of patients with metastatic breast cancer: A qualitative study.

Abstract

346 Background: More than 150,000 women live with incurable metastatic breast cancer (MBC) in the U.S. today. Survival for patients with MBC has greatly improved over recent decades, but studies exploring aspects of breast cancer survivorship (quality of life, health outcomes, coping, etc.) disproportionately focus on patients with non-metastatic disease. In an effort to better serve patients with MBC at our large tertiary cancer center, we launched a project to understand the preferences, perceived barriers, and unmet needs of this unique population. Methods: We employed focus groups to qualitatively examine patients living with metastatic breast cancer at all points in their journey with advanced cancer. Two experienced patient advocates provided feedback on the protocol. We invited 37 patients with metastatic breast cancer to participate in focus groups of 2-4 subjects. A researcher moderated these recorded conversations, asking subjects to discuss their memories of being diagnosed with MBC, their everyday experience of living with MBC, and their hopes and fears as they look forward. Written transcripts of the studies are coded using the Atlas.ti qualitative research software with intercoder reliability calculated among three coders. Recurrent themes are identified and described. Results: 32 patients participated in 13 focus groups. The majority of patients were white (88%), with an average age of 59 (median 61). Median time since diagnosis with metastatic disease was 57 months (4.75 years). 84% of patients had estrogen-receptor positive MBC, 28% had HER2-positive MBC, and none had triple negative disease. Initial themes identified include a desire for more information about treatments (new drugs, clinical trials, symptom management), and about planning in the face of uncertainty (especially financial, but also regarding end-of-life challenges, relationship changes). Patients also commonly expressed a need for more connection to fellow patients who can provide guidance and support. Analysis of data and formulation of findings are still ongoing, and will be completed by the end of 2023. Publication is planned for early 2024. Conclusions: Metastatic breast cancer cancer survivors continue to have unmet physical, practical, emotional, and spiritual needs. These needs change throughout a patient’s journey. The knowledge gained from exploring these needs will inform projects and management changes designed to better serve our patients by adapting existing services and creating new ones.