The Metastatic Breast Cancer Alliance (MBCA)[1] is comprised of non-profit advocacy, funding and industry organizations and individuals who seek to transform and improve the lives of women and men living with metastatic breast cancer. Stage IV or metastatic breast cancer is different from early breast cancer. The disease is not curable. People with MBC are always in treatment, switching treatment regimens as their disease progresses. Metastasis is the cause of virtually all breast cancer deaths, and nearly 40,000 die annually of MBC. Because their time is limited, patients daily experience a host of psychosocial and quality of life issues.

Objective: To review prior literature and patient survey reports related to quality of life needs for patients with MBC, interview key experts in the field, and to assess the extent to which non-profit organizations, clinical providers and others are meeting those needs.

Methods: We conducted (1) a literature review of >140 recent articles and studies in psychosocial research as well as survey findings from over 6,000 patients living with MBC; (2) a desk research analysis of MBCA members’ efforts in patient advocacy, research, policy, education and support, and public awareness; analysis of websites (n=24) and print materials (n=27); (3) interviews with MBC Alliance members about their information and services for MBC patients (n=16); and (4) an online survey of hospital-based patient navigation programs (n=31) and telephone helplines (n=8) provided by breast cancer and all-cancer organizations.

Results: We found inconsistent and incomplete development of patient education materials about metastatic disease and treatment options. Health care teams are often not taking time to educate patients on treatment options, or to routinely assess and treat their side effects and symptoms. Resources, staffing and time are not available to meet patients’ quality of life and psychosocial needs. Anxiety and depression in MBC patients remain untreated in many cases. Palliative care is misunderstood and still associated with end of life care by both doctors and patients. Yet, quality of life for MBC patients can be improved with increased access to palliative care earlier in the diagnosis of the disease.

Conclusion: Psychosocial research and patient surveys identify the information and service needs that would improve the quality of life for MBC patients; however, our study finds that those needs are rarely met. Advocacy groups and health care providers need to act strategically to put into place programs and support services that address the psychosocial and quality of life needs of patients living with MBC.

[1] https://www.mbcalliance.org/

Citation Format: Musa Mayer, Katherine Crawford-Gray, Shirley Mertz, Ginny Knackmuhs, Marc Hurlbert. What we know and what we must do: A metastatic breast cancer alliance quality of life landscape analysis [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P5-15-20.