Abstract PS9-67: Information needs, media use, and utilization of an online resource to support how young women with metastatic breast cancer evaluate breast cancer media reports
Authors: Robin Hilary Pugh Yi, Piri Welcsch, Craig Dearfield, Kelly Owens, Susan Friedman
Journal: Cancer Research (2021)

Abstract Background. Breast cancer is the most commonly diagnosed cancer among women ages 18-39. Young Breast Cancer Survivors (YBCS) face different prognoses, disease characteristics, treatment options, and short- and long-term outcomes from their older counterparts. Women with metastatic breast cancer (mBC) face additional burdens. Median survival time for mBC ranges from 1 - 4 years, often spent in continual treatment. In 2013, the estimated prevalence of mBC was 138,622, including approximately 20,000 women younger than 50 years. YBCS and patients with mBC have distinct needs for information, resources and support. Health information in the media often does not address their concerns, is misleading, or is confusing regarding which information is clinically relevant. Flaws include ignoring side effects, failing to discuss alternative options, exaggerating effectiveness, and under-emphasizing risk. This can affect health care decisions. In response, in 2014 FORCE developed “eXamining the Relevance of Articles for You ” (XRAY), a platform to review breast cancer topics reported in the media. XRAY explains the science in plain language, provides patients with a clinical relevance rating, connects patients to guidelines, and corrects misinformation or misreporting by the media. In the fifth year of XRAY implementation, FORCE conducted a national survey on information seeking and sharing of YBCS and women with mBC. The survey asked respondents, “Has your breast cancer progressed, recurred, or metastasized since your initial diagnosis?” The current report presents a summary and discussion of these respondents’ survey results. Methods. FORCE launched the online survey nationally, recruiting participants through a targeted media campaign launched through a network of 50 organizations. Eligible participants were women between ages 18 and 45 years who had a history of breast cancer or test results indicating genetic risk for breast cancer. Analysts calculated response frequencies and percentages for each survey item. Results. A total of 135 survey respondents indicated that their breast cancer had progressed, recurred, or metastasized since their initial diagnosis. Women with mBC were more likely than the whole participant sample to have looked up information about chemotherapy, radiation therapy, tumor marker tests, treatment side effects, survivorship and long-term health outcomes, and quality of life with cancer. They were less interested in information about breast cancer screening, risk for other cancers, risk-reducing mastectomy, and risk-reducing ovary removal. A majority of the mBC sample used at least some type of media to look up health information at least monthly. Most respondents indicated that they had shared and discussed media reports with their healthcare providers and that the discussion had impacted health-related decisions. More than three-fourths of respondents indicated interest in information about all components of research and reporting quality evaluated by XRAY. Discussion. Results confirm that a tailored XRAY portal for people with mBC will help to serve this population. Results also suggest that FORCE could benefit from working with organizations that specialize in serving people with mBC to reach this population, disseminate XRAY reviews, and obtain input on content and format of XRAY for mBC. Citation Format: Robin Hilary Pugh Yi, Piri Welcsch, Craig Dearfield, Kelly Owens, Susan Friedman. Information needs, media use, and utilization of an online resource to support how young women with metastatic breast cancer evaluate breast cancer media reports [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 PS9-67.