Abstract
Abstract Background: Metastatic breast cancer (MBC) patients report a lack of information tailored to their stage IV diagnosis (MBCA Landscape Analysis, 2013; LBBC’s Silent Voices 2006). Recent research by Living Beyond Breast Cancer (LBBC) showed that patients seek information in the weeks following a metastatic diagnosis as part of their sense-making. At the time of diagnosis, when patients report high uncertainty and vulnerability, Healthcare Providers (HCPs) are highly trusted as information sources. HCPs, particularly in smaller, community-based hospitals and cancer centers, cite lack of time and informational resources as their greatest barriers to addressing the psychosocial and educational needs expressed by their newly diagnosed metastatic patients (LBBC 2018). In 2019, LBBC focused on developing a model outreach program to HCPs to distribute evidence-based educational resources and support programs to their patients newly diagnosed with metastatic breast cancer (MBC). Methods: LBBC conducted research with MBC patients and HCPs to determine needs, topics of interest, resource formats and optimal resource distribution channels through HCPs. LBBC held two MBC patient focus groups and two HCP focus groups of nurses and social workers. The findings from the patient focus groups and the first HCP focus group informed the development of a survey for HCPs, which was fielded in November 2019. The survey data was analyzed, and key findings from the HCP survey and MBC focus groups determined the topics of the final HCP focus group in January 2020. Results: Surveys were sent to LBBC’s HCP provider database and the memberships of select professional associations. A total of 352 surveys were completed; 50 percent of respondents were social workers, 46 percent were nurse navigators or nurse practitioners, and 4 percent were physicians or other. The data from the survey and focus groups showed that patients and HCPs had difficulty finding MBC-specific materials and programs despite a distinct need within the community. Both groups wanted information to help patients better understand their diagnosis, treatment plan, and overall prognosis. Resources on mental health, talking to family about diagnosis, and financial toxicity were also of primary importance. HCPs reported needing materials for patients that are evidence-based, credible and conveyed in plain language. Patients reported wanting a reliable online hub of MBC information and resources. Both patients and HCPs preferred printed or digital downloadable materials, or both. Additional findings showed MBC patients who are African-American or under age 45 are underrepresented in the existing content. Other gaps include content for spouses/partners, family, and caregivers. Conclusions: People newly diagnosed and living with MBC, and the HCPs who serve them, want evidence-based information, tailored to the MBC patient, to help them understand their diagnosis and its psychosocial and financial impact, developed by credible organizations and delivered in easy-to-read, printable, or digital formats, or both. Using the data from this research, LBBC is developing a model outreach program to assist HCPs meet the needs of their newly diagnosed metastatic breast cancer patients. Citation Format: Catherine L Ormerod, Stefanie Washburn, Kathleen D. Swiger, Casey O'Neill. Developing an outreach model to healthcare providers treating newly diagnosed metastatic breast cancer patients [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS9-31.
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