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Chapter 2 reviews the landscape of scientific research with a distillation of data from clinical
trials, funded biomedical research grants, and interviews with key opinion leaders (KOLs).
Chapter 3 provides a comprehensive review of the available quality of life literature and
psychosocial research of patients living with MBC. This section shares learning about
psychological distress, emotional support, and the communication issues with HCPs.
Chapter 4 describes internal research of Alliance members’ information and support services
to better understand gaps and opportunities for improving the quality of life for people living
with MBC.
Chapter 5 investigates the limitations around accurate epidemiologic statistics collected or
the lack thereof for patients with MBC, such as National Cancer Institute (NCI) Surveillance,
Epidemiology, and End Results (SEER) registries that capture only incidence, initial treatment,
and mortality.
Chapter 6 looks at the lack of understanding about MBC, which has very real implications for
patients. A greater understanding of what MBC is and how it differs from early stage breast
cancer is needed among caregivers and HCPs, insurers, policy makers, researchers, and other
key stakeholders, including people living with MBC and those with breast cancer.
The main findings from our research will lay a solid foundation for the Alliance’s work over 2015
and 2016. In the final chapter of this report, Chapter 7, we outline actions for 2015−2016 that
align with our 3 goals:
1. Advance research focused on extending life, enhancing quality of life, and ultimately
ending death from MBC.
2. Improve knowledge and access by ensuring all MBC patients and their caregivers know
how to and can access the care and services they need from a responsive and well-
informed health care system.
3. Increase understanding of MBC and how it differs from early stage breast cancer among
those diagnosed, their families, HCPs, researchers, and health policy experts.
We look forward to reporting on our progress in 2015.
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