Quality of life and care needs in women with estrogen positive metastatic breast cancer: a qualitative study

Abstract

Background: In recent years, the prognosis of metastatic breast cancer (MBC) has improved with more effective therapies applicable to a wider range of patients. To many patients, a MBC diagnosis thus initiates a prolonged course of illness and treatment. This qualitative study aimed to explore the long-term health-related quality of life (HRQoL) and support needs in MBC patients of all ages in the Danish context.

Material and methods: Eighteen MBC patients participated in five qualitative focus group interviews that were analyzed using content analysis and a constructivist approach.

Results: The participants described how MBC severely reduced their physical and psychosocial functioning and required a constant adaptation of their quality of life (QoL) standards in relation to their changing life situation and disease progression. Overall, they felt medically well-treated but lacked a multidisciplinary approach to care including psychological support, in particular, but also manual physiotherapy, health care coordination and social counseling. The participants called for continuity of care with the same health care professionals as this facilitated communication and flexibility in planning treatment and controls. They requested a reduction of precious time spend on treatment to enable them to focus on their most meaningful relations and activities.

Conclusion: With the MBC diagnosis, the focus of treatment switches from disease eradication to prolonging survival, alleviating symptoms and improving QoL. To patients, MBC marks a shift in expectations from quantity to quality of life and a perpetual adaptation of their QoL standards. To sustain patients’ HRQoL, it is important that along with improvements in life-prolonging treatment, comprehensive care also supports their main psycho-social needs. These patients needed support in maintaining normality and role functioning enabling them to focus on living, not merely surviving, through this prolonged disease phase.

Acknowledgments

The authors wish to thank all the participants as well as the local members of the Danish Breast Cancer Organization (DBO) who helped to include the participants in the study. We also thank social anthropologist Steen Lee Mortensen for providing independent methodological and analytical counseling as well as Pfizer, Denmark, for the research grant funding the study.

Disclosure statement

AnthroConsult, which is owned by GLM, received an unrestricted research grant from Pfizer Denmark to carry out the present study. However, Pfizer had no involvement in the methodological design, analysis, manuscript writing or choice of journal. AnthroConsult has previously received research grants from Pfizer for other studies, though none related to breast cancer. IBM and RK have no conflicting interests. Institutionally, Rigshospitalet has received research funding from Roche, Novartis and NanoString for other projects, but BE has no conflicting interests in relation to the present project.

Additional information

Funding

The study was funded by an unrestricted research grant from Pfizer, Denmark. Pfizer had no involvement in the methodological design, analysis, manuscript writing or choice of journal.