Identifying Gaps in Metastatic Breast Cancer Patient Knowledge and Their Communication Experiences with Healthcare Professionals

October 2016 Vol 7, No 9
Katherine Crawford-Gray, MBA, MSc; Metastatic Breast Cancer Alliance

Objectives: When patients are told they have metastatic breast cancer (MBC), it’s very difficult for them to absorb and interpret what is being told to them at the time of their terminal diagnosis. We ask, “How can nurse navigators more effectively communicate with MBC patients with these challenges in mind?” To help with this objective, we first need to clarify the current state of communication between healthcare professionals (HCPs) and MBC patients to identify areas for communication improvement and improved patient knowledge about their disease.1,2 This can then inform development of tools to aid in communicating with MBC patients during initial diagnosis and treatment planning discussions.

Methods: An online population survey of MBC patients (n = 563) measured patient communication experiences reflecting on what conversations with HCPs were like prior to starting treatments for MBC. Survey recruited from November 2015 to June 2016 through MBC patient organizations. Segmenting factors were education level, age, racial background, marital status, and time since diagnosis of MBC.

Results: More than half of respondents (56%) were diagnosed with MBC in the past 2 years. Majority of respondents were white (90%), supported (72% married and 95% insured), highly educated (30% with postgraduate degree), with a larger group de novo, stage IV from beginning (37%) compared with the general MBC population in the United States that has a recurrent diagnosis that progressed to metastatic disease (~10%-20%).

Whereas 96% of patients surveyed indicated they knew their cancer type, less than half (46%) included both HER2 and hormone status when asked to describe their type. One-third of patients felt they didn’t have enough knowledge to participate in decision-making around their treatment options; 58% of patients felt rushed and starting treatment was urgent; less than one-quarter (24%) sought a second opinion; 38% did not research treatment options prior to starting therapy; 71% did not recall discussing goals/hobbies as part of their pretreatment talks; 69% said complementary therapy was not discussed by their oncologist; only 22% said treatment breaks were mentioned; and just 62% discussed pain and symptom management. Nearly two-thirds did not discuss clinical trials as part of their treatment plan. Patients did not recall quality-of-life considerations during initial treatment discussions after a metastatic diagnosis.

Conclusions: Communication gaps between HCPs and MBC patients must be addressed to improve the patient experience. Patients likely overestimate their knowledge about their breast cancer subtype. Not realizing they know less than they should, they also likely overestimate their ability to participate in decision-making about their treatment. To improve patient engagement in discussions, and their confidence level in decision-making, more needs to be done to educate patients on their cancer subtype, second opinions, and participating in clinical trials. Treatments that improve quality of life, such as palliative care, complementary therapy, and treatment breaks, need to be better integrated in treatment discussions. Discussion and education tools could greatly impact the success of these difficult conversations.


  1. Mayer M, Huñis A, Oratz R, et al. Living with metastatic breast cancer: a global patient survey. Commun Oncol. 2010;7:406-412.
  2. Freedman RA, Kouri EM, West DW, et al. Racial/ethnic disparities in knowledge about one’s breast cancer characteristics. Cancer. 2015;121:724-732.
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