ABSTRACT
People with metastatic breast cancer face barriers to finding information and support Background FORCE, a national nonprofit organization developed a health communication tool to help patients assess research relevance, key findings, and the quality of media reporting on cancer to support informed and shared health decision-making. People with metastatic breast cancer (mBC) are a priority population. Methods The organization conducted a survey about awareness of and access to breast cancer information and supportive services for people living with metastatic breast cancer. The organization promoted the survey through e-mail and social media, and a network of partner organizations that serve the metastatic breast cancer community. The survey invited respondents to volunteer to participate in focus groups and a follow-up survey in order to support efforts to serve this priority population. Results and Conclusions While interest in clinical trials was high, many users reported that thy do not know how to find an appropriate clinical trial. A majority of the 335 respondents were interested in information about clinical trials, treatment side effects, research findings, long-term health issues, diet/exercise, fatigue, and emotional health. Three quarters of the respondents indicated that they had never participated in a clinical trial, 67% indicated they would be interested in participating in the future, and about 40% indicated they did not know how to find a clinical trial recruiting people with metastatic breast cancer. Approximately one-third of participants were unable to obtain referrals to services they sought. Other barriers to services included lack of insurance coverage, lack of availability, and the COVID-19 public health emergency. Focus group responses indicate that women with mBC find the health communication tool to be useful, and appropriate in language, images, and tone. Results indicate that women with mBC are interested in finding information about clinical trials and other topics related to treatment side effects and quality of life. FORCE and partners are incorporating these results into tailored online resources to meet the needs of the mBC community.