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Research presented at the 2020 San Antonio Breast Cancer Symposium highlighted the need for reliable information to address the educational and psychosocial needs of patients with newly diagnosed metastatic breast cancer.
Patients with newly diagnosed metastatic breast cancer and the healthcare providers (HCPs) that treat them reported difficulties finding the necessary materials and programs to address the psychosocial and educational needs of patients, according to research presented at the 2020 San Antonio Breast Cancer Symposium.
Both parties expressed a desire for increased availability of plain language, evidence-based information to accompany diagnosis.
“Patients and HCPs need information to help explain key clinical topics such as understanding diagnosis and treatment planning, treatment side effects and management, expectations for survival, and mental health and coping strategies,” Stephanie Washburn, manager of healthcare provider outreach at Living Beyond Breast Cancer (LBBC), who spearheaded the study, said during the presentation. “HCPs prefer information that is evidence-based, credible, and conveyed in plain language.”
A total of 352 surveys were completed by HCPs across the United States. From those surveys, 50% of respondents were social workers, 46% were nurse navigators or nurse practitioners, and 4% of respondents were physicians or other.
The surveys were developed following discussions with 2 patient focus groups (14 participants) and 2 HCP focus groups consisting of nurses and social workers (15 participants).
According to respondents, the most frequently requested clinical topic (47% of patients) by patients with newly diagnosed metastatic breast cancer was plain language information to aid with understanding their diagnosis. Other frequently requested clinical topics were as follows:
Seventy-six percent of respondents stated that their preferred educational format was printed materials such as brochures and booklets, with 58% expressing a desire for materials that can be downloaded and printed.
The majority of survey respondents (57%) were from community-based cancer centers, with 20% coming from NCI designated Comprehensive Cancer Centers and 12% based in an academic or university cancer center setting.
Financial concerns (74%) and family or relationship concerns (45%) were identified as the biggest issues for patients, with employment issues (34%), discussing a diagnosis with children (28%) and insurance coverage (25%) also cited as important practical and daily living tips needing to be addressed.
Both patients and providers alike noted that a reliable online hub of information and resources regarding metastatic breast cancer was needed. Patients with newly diagnosed metastatic breast cancer who were Black, or under the age of 45 reported that they felt underrepresented in the existing content, with content gaps identified for spouses and partners, along with family members and caregivers.
“Using this data, LBBC is developing a model outreach program to assist HCPs in meeting the needs of their newly diagnosed MBC patients,” said Washburn. “As a first step, LBBC has developed 2 online information hubs to provide easy access to key content for people living with newly diagnosed MBC.”
Those hubs can be accessed at the following links:
Ormerod CL, Washburn S, Swiger KD, O’Neill C. Developing an Outreach Model to Healthcare Providers Treating Newly Diagnosed Metastatic Breast Cancer Patients. Presented at: 2020 San Antonio Breast Cancer Symposium; December 8-11. Poster PS9-31.