Understanding the Needs of Patients with Metastatic Breast Cancer: Results of the Make Your Dialogue Count Survey

Abstract

With more patients with metastatic breast cancer (MBC) living longer, patient-centered communication and shared decision making between patient and oncologist are vital to improve care and quality of life in patients with MBC. The Make Your Dialogue Count survey explored emotional needs of patients at initial diagnosis of MBC and treatment change to increase awareness about gaps and facilitate communication between patients and oncologists. The survey was conducted (June-August 2014) online, by telephone, or on paper among US women with MBC and US-licensed medical oncologists. Patient data were unweighted. Oncologist data were weighted by geographic region and years in practice by sex to match actual proportions in the population. Statistically significant differences between groups were determined by standard t-test of column proportions and means at the 95% confidence level. Between initial diagnosis of MBC and treatment change, some patients' attitudes and feelings adapted as their disease advanced. Fewer patients reported fear of the unknown (58% versus 44%) and distress over believing something could have been done to prevent disease progression (26% versus 12%), but more patients reported hope of keeping the disease stable (46% versus 59%) and confidence in treatment options (29% versus 37%). During their treatment journey, more women with children ≤17 years old were distressed because they believed something could have been done to prevent disease progression versus women with children 18+ years old or no children. There were instances of misalignment between patient expectations and what oncologists actually discussed with patients. Our findings suggest that patients exhibit an ability to adapt during their disease. Having a shared understanding of concerns and needs of patients serves to strengthen the patient-oncologist alliance and creates a framework for oncologists to tailor disease management and coping strategies to improve quality of life for patients of all ages with MBC.

What Is Important When Making Treatment Decisions in Metastatic Breast Cancer? A Qualitative Analysis of Decision-Making in Patients and Oncologists

“…Similarly, in the “Make Your Dialogue Count Survey” by Brufsky and colleages, ~80% of oncologists felt that discussing long‐term plans was important in treatment decisions, yet only 57% of patients reported having these discussions with their oncologist . Our study adds to the Brufsky study by taking an in‐depth approach to exploring variation in how specific patient preferences are considered in treatment decision‐making.…”

Support for Metastatic Breast Cancer Patients—a Systematic Review

“…1, Supplementary material) [9][10][11][12][13][14][15][16][17][18][19][20]. Two studies were described in two papers [10,16,19,20] while 1 paper included 2 studies [11]. The list of excluded studies with reasons for exclusion is presented in the Supplementary material.…”

Incongruence between women's survey‐ and interview‐determined decision control preferences: A mixed methods study of decision‐making in metastatic breast cancer

“…Quality decision‐making is an important need for women with metastatic breast cancer (MBC) and presents an opportunity for clinicians to provide individualized, high quality, patient‐centered care. Women with newly diagnosed MBC are living longer; 27% have a 5‐year survival rate and 9% have a 10‐year survival rate . Aside from choices amongst various anticancer treatments, women may also need to decide whether and when to forgo anticancer treatments and should also participate in advance care planning (ACP) about life‐sustaining treatments.…”

“…Women with newly diagnosed MBC are living longer; 27% have a 5-year survival rate and 9% have a 10-year survival rate. 1 Aside from choices amongst various anticancer treatments, women may also need to decide whether and when to forgo anticancer treatments and should also participate in advance care planning (ACP) about life-sustaining treatments. Palliative care specialists are commonly consulted to assist patients to understand and match their values and preferences for treatments near the very end of life; however, based on evidence and guidelines, earlier integration of palliative care in the cancer trajectory calls for these specialists to provide patients with more prospective decision support.…”