Exploring the lived experiences of women with metastatic breast cancer and their HRQoL questionnaire preferences: a qualitative study

Background: Managing health-related quality of life (HRQoL) in patients with metastatic breast cancer (MBC) is crucial due to the physical, emotional, and social burdens of disease and its treatments. This study examined the HRQoL of patients with MBC and compared the patients’ perspectives of two validated tools—the Functional Assessment of Cancer Therapy - Breast (FACT-B) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire QLQ-C30 with its breast cancer-specific module QLQ-BR42 (EORTC) to determine which is most suitable for assessing HRQoL in patients with MBC. Methods: A qualitative study design was used to explore patients’ HRQoL and their perspectives on the two questionnaires, FACT-B versus EORTC, focusing on what matters most to the patients. Individual interviews were conducted between September and December 2024 at the Department of Oncology, Odense University Hospital, Denmark. Thematic analysis was selected to extract and analyze data. Results: Fifteen women with MBC were included. Median age was 62 years (range 28–79), and the median duration of the interviews was 21 min (range 13–32 min). The analysis identified three main themes: (1) Living with metastatic disease, when incurable cancer is a life condition, (2) Design of the questionnaires, 3) Content of the questionnaires. Participants described impaired HRQoL, as they were hindered in living an everyday life, felt lonely at times, engaged in protective buffering, and lived in fear of the next scan. Overall, the participants found the design of the two questionnaires acceptable; neither was preferred over the other. However, regarding the content, the participants expressed a clear preference for FACT-B over the EORTC, primarily due to its greater relevance to their current situation, reflecting everyday life and need for support. Conclusions: Participants in this study reported impaired HRQoL, marked by disrupted daily life, loneliness, protective buffering, and scanxiety. They preferred the FACT-B over the EORTC questionnaire for measuring HRQoL because of its focus on personal and emotional aspects, which reflected their lived experiences. However, further research is warranted to validate these findings in more diverse populations in the metastatic breast cancer context.