Campaign Aims to Improve Patient-Provider Communication About Metastatic Breast Cancer

July 8, 2016
Ellie Leick

Although public awareness of breast cancer is generally high, this is not the case for metastatic breast cancer, and the Association of Community Cancer Centers (ACCC) is partnering with leading cancer advocacy groups on a new project to change that.

Although public awareness of breast cancer is generally high, this is not the case for metastatic breast cancer, and the Association of Community Cancer Centers (ACCC) is partnering with leading cancer advocacy groups on a new project to change that.

The past few decades have seen dramatic advancements in the early diagnosis, detection, and treatment of breast cancer; however, approximately 40,000 individuals die of the disease every year, and an estimated 20% to 30% of all breast cancer cases will become metastatic, according to statistics compiled by the Metastatic Breast Cancer Network. Despite these sobering statistics, 60% of respondents to a national survey reported knowing little to nothing about metastatic or late-stage disease, noted Marianne Gandee, ACCC’s assistant director of provider education, in a recent interview with Oncology Nursing News.

“We also found in our research a sense of isolation and stigmatization,” Gandee continued. “Once you’re diagnosed with metastatic breast cancer, your life becomes medicalized—you’re going to be on treatment for the rest of your life.” Physicians often struggle to converse with patients with metastatic disease, with many relying on overly technical language or minimizing the severity of the disease, she added.

To help empower patients with metastatic breast cancer and improve communication, particularly in the community oncology setting, the ACCC is working with the Avon Breast Cancer Crusade, the Cancer Support Community (CSC) and the Metastatic Breast Cancer Alliance to spread awareness and information to physicians and patients alike. Funded by Pfizer Oncology, the project aims to improve information resources, as well as the effectiveness of provider—patient communication.

Although the conversations may be difficult, they are important ones to have, said Gandee. To help identify the information and communication needs of patients with metastatic breast cancer, the ACCC will be using information gleaned from the CSC’s Cancer Experience Registry, a forum where patients and caregivers can share their experiences.

“We’ll be encouraging our members to have their patients participate in that registry,” Gandee added. “We need more data to understand what’s going on with this patient population and also to more effectively communicate with them when they come into the community setting.”

What’s learned from the registry will help in the development of tailored resources and tools for providers to help advance patient-centered care, including, said Gandee, an Effective Practices workbook that the organization plans to distribute to providers later this year. Resources will also include examples of effective communication practices in metastatic breast cancer treatment and patient management.

Though ACCC’s focus is on provider education, “with this project, we are trying to involve the patient voice as much as possible in developing these tools and resources for providers,” Gandee stressed, and the active role played by the project’s advocacy partners will help to facilitate this.

“The public has a limited knowledge of what ‘metastatic’ means in relation to breast cancer,” said Marc Hulbert, PhD, Chair, MBC Alliance. “Sadly, many current breast cancer initiatives do not focus on the metastatic community. People living with the disease are frustrated by a lack of knowledge and misinformation about metastatic breast cancer.”

For patients, Gandee continued, “I think it’s really important to ask questions, have a support system, and understand the impact treatments can have on quality of life. If something is overly clinical, ask it to be explained in a different way.”

And for providers—the multidisciplinary team—the focus should be on helping patients to have the tools and information they need to feel empowered and participate in shared decision making about their care, stressed Gandee, “We’ve found that the level of engagement of patients in the office isn’t where it should be. Providers need to support that.”

Click here to learn more about the ACCC Metastatic Breast Cancer Project.