Information and Support Needs of People with Newly Diagnosed Metastatic Breast Cancer

November 2021 Vol 12, No 11
Stefanie Washburn, MSW, LSW
Living Beyond Breast Cancer
Catherine L. Ormerod, MSS, MLSP
Living Beyond Breast Cancer
Kathleen D. Swiger, MPH
Global Patient Advocacy

Background: Metastatic breast cancer patients report a lack of information tailored to their diagnosis. Recent research by Living Beyond Breast Cancer (LBBC) showed that patients seek information in the weeks following a metastatic diagnosis to deepen their understanding and sense of meaning. At this time, healthcare providers (HCPs) are highly trusted information sources.

Objectives: In 2019, LBBC initiated development of a model HCP outreach program to provide evidence-based educational resources and support programs to newly diagnosed metastatic breast cancer (NDMBC) patients. The objectives included:

  • Understanding education and support needs of NDMBC patients
  • Understanding HCPs’ perceptions of the education and support needs of these individuals
  • Developing resources to assist NDMBC patients and their providers in accessing materials and support

Methods: LBBC conducted research with metastatic breast cancer (MBC) patients and HCPs. LBBC held 2 patient and 2 HCP focus groups to determine needs, topics of interest, and preferred formats and distribution channels. Findings from the patient focus groups and the first HCP focus group informed development of an HCP survey, fielded online in November 2019. Results of the survey analysis determined the topics for the final HCP focus group in January 2020.

Results: Focus groups included 20 patients and 14 HCPs. The 2 HCP focus groups included the same participants; 352 HCPs completed the survey, including nurse navigators and social workers. Patients and HCPs had difficulty finding MBC-specific resources. There was observed overlap between patients’ information needs and HCP perceptions of these needs. Both groups emphasized the need for content about diagnosis, treatment, and prognosis. Resources on mental health, talking with family, and financial toxicity were also important to both groups.

Patients wanted an online clearinghouse of MBC resources. Patients and HCPs preferred printed and/or digital downloadable materials. HCPs needed evidence-based, credible patient materials in plain language. Additionally, black MBC patients, those younger than age 45 years, and caregivers are underrepresented in existing content.

LBBC is developing a model outreach program to assist HCPs in meeting the needs of NDMBC patients. LBBC has created information hubs for people with NDMBC and their HCPs and is developing content for black people and young women with MBC. These findings have been communicated through targeted outreach and presentations.

Conclusions: People with NDMBC and their HCPs need evidence-based information about the diagnosis and its psychosocial and financial impact. This content is best received when developed by credible organizations and delivered in easy-to-read, printable and digital formats.

Funding: This project is supported in part by a collaborative sponsorship from Pfizer Oncology.

Similar abstracts on this topic were accepted by the 2020 San Antonio Breast Cancer Symposium and the 2021 Advanced Breast Cancer Sixth International Consensus Conference.


Living Beyond Breast Cancer. Silent Voices. 2006.

Living Beyond Breast Cancer. Unpublished qualitative research. 2018.

Metastatic Breast Cancer Alliance. Changing the Landscape for People Living with Metastatic Breast Cancer. Landscape Analysis. 2014.

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Last modified: August 10, 2023

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