Background: An estimated 250,000 Americans are currently living with MBC. While breast cancer is a high-profile disease receiving significant public funding, patients with metastatic breast cancer face unique challenges. The Association of Community Cancer Centers (ACCC) seeks to expand the conversation to address gaps between early and metastatic disease and improve the management of MBC in the community setting.
Communication challenges that cancer care teams face with MBC patients include using a tailored and thoughtful approach, balancing hope and realism, encouraging patient engagement during conversations, incorporating principles of shared decision making, addressing patient financial concerns, and evaluating family/caregiver involvement.
Objectives: Understand the landscape of education offered to MBC patients across the United States. Based on gaps, provide supplemental resources so that cancer programs can provide support to the whole patient, considering the individual’s goals and preferences.
Methods: An environmental scan was completed of nationally available resources. A survey on MBC communication strategies was administered in a variety of oncology provider settings from December 2018-January 2019. Nurse navigators comprised 34 of 104 respondents. Of these navigators, 38% worked exclusively with breast cancer patients, 21% indicated work with breast cancer patients comprised at least half of their role, and 28% indicated it was less than half of their role.
Results: In settings with a nurse navigator, the most common resource provided to patients was written information on the diagnosis (78%). Only 50% provided recommendations for external resources that might be available to support the patients. Only 53% reported using a tailored approach to working with MBC patients, with 47% indicating that they use the same methods as with stage I-III patients. Sites with a nurse navigator showed that they use a multidisciplinary approach, and in addition to navigation, were found to commonly use the resources of a financial counselor (71%), a social worker (64%), and nutrition expert or dietitian (64%). Patient psychosocial needs were identified as the top challenge for working with MBC patients versus stage I to III patients; 57% reported difficulty managing patient expectations, and 55% reported patient financial concerns. While 66% of cancer programs offer a general breast cancer support group, only 27% offer a stage IV group; 59% of respondents rely on casual conversations with patients to assess what they want, and only 34% ask patients to define what quality of life would mean for them; 33% document goals in the EMR.
Over 150 free resources specific to MBC were categorized from diagnosis through hospice, resulting in a curated online library that any member of the multidisciplinary care team can use with their patients. These tools can be used to encourage shared decision-making with clinicians, and supplement the support options that cancer programs are already providing. Virtual options are particularly valuable for programs in rural areas or with patients who are trying to fit support into their busy schedules.
Conclusions: Patients with MBC should be given specialized care to address their unique diagnosis and improve communications with their multidisciplinary team. The ACCC Resource Library gives both low and highly resourced programs access to more supportive care tailored to metastatic breast cancer.
Note: Funding for this project was provided by Pfizer Oncology.