Rationale: Breast cancer diagnosis at a young age is associated with higher risk of recurrence, mortality, morbidity, and impact on quality of life. Long-term effects of treatment may include early menopause, fertility impairment, neuropathy, cardiovascular disease, lowered bone density, and risk of second malignancies. Young women with or at-risk for breast cancer often seek health information through mainstream print and digital media. However, they often find it does not address their unique concerns, is difficult to interpret, or even misleading. Media reports of breast cancer research are often unreliable, misleading, or confusing regarding which information is clinically relevant. Young women with or at-risk for breast cancer, need accurate, clearly presented information based on sound evidence to help them make informed decisions about their specific health needs. To help women better understand media coverage about new research, Facing Our Risk of Cancer Empowered (FORCE) developed the CDC-funded XRAYS (eXamining Relevance of Articles to Young Survivors) program. XRAYS is an online resource that provides brief articles summarizing recent research relevant to young women with or at-risk for breast cancer. XRAYS articles rate the quality and relevance of research, the quality of media reporting, and suggest questions users may be useful to address with health care providers. One critical aim of XRAYS is to improve users’ understanding of the information presented in media reports related to breast cancer. Objective: The objective of this study was to assess whether XRAYS improves readers’ knowledge about information presented in media reports relevant to breast cancer more than reading media reports alone. Methods: To assess XRAYS’ impact on users’ knowledge of information presented in media reports, an evaluator conducted a study with 36 volunteer participants who were attending a FORCE conference. Participants were randomly assigned to treatment or control groups. Both groups completed pre-test paper and pencil multiple choice assessments of knowledge regarding information presented in the article they read, in order to assess baseline knowledge. Then, the treatment group read a media report and the corresponding XRAYS article and the control group read only the media report. After reading the materials, participants answered the same paper and pencil multiple choice questions, so that changes in knowledge could be assessed. Results: A between groups t-test indicated that the groups had comparable baseline knowledge about the material they were assigned to read. A within group comparison showed that the control group’s knowledge did not significantly change between pre- and post-test, while the XRAYS group’s knowledge increased significantly (t(18)=-2.67, p<.05). A between group comparison of change scores showed that the treatment group’s change was significantly greater than the control group’s (t(34)=-3.01, p<.01). The table shows results of the between group comparison of knowledge change. (t(34)=-3.01, p<.01). The table shows results of the between group comparison of knowledge change.GroupNMean Change Score (s.d.)t-score (d.f.)PComparison Group17-16.47 (35.52)-3.01 (34)<.01XRAYS1918.95 (34.94) Conclusion: Results indicate that XRAYS is effective in supporting users in learning more factual content from media reports on cancer research than people who read media reports alone, and that it may be useful to develop similar resources to meet other audiences’ needs for information about cancer research. Citation Format: Robin Hilary Pugh Yi, Piri Welcsch, Lisa Rezende, Craig Dearfield, Kelly Owens, Susan J. Friedman. Effectiveness of an online educational resource in increasing lay users' understanding of information in media reports on breast cancer research [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-15-07.
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.
Rationale: Breast cancer diagnosis at a young age is associated with higher risk of recurrence, second malignancy, mortality, morbidity, and impact on quality of life. Young breast cancer survivors face more life-years after treatment, with associated financial, emotional, and physical burdens. Long-term effects of treatment may include early menopause, fertility impairment, neuropathy, cardiovascular disease, lowered bone density, and risk of second malignancies. Young women with or at-risk for breast cancer often seek health information through mainstream print and digital media. However, they often find it does not address their unique concerns, is difficult to interpret, or even misleading. Media reports of breast cancer research are often unreliable, misleading, or confusing regarding which information is clinically relevant. Common flaws include exaggerating prevalence, ignoring potential side effects of treatment, and failing to discuss all treatment options. Young women with or at-risk for breast cancer, need accurate, clearly presented information based on sound evidence to help them make informed decisions about their specific health needs. To help women better understand media coverage about new research, Facing Our Risk of Cancer Empowered (FORCE) developed the CDC-funded XRAYS (eXamining Relevance of Articles to Young Survivors) program. XRAYS is an online resource that provides brief articles summarizing recent research relevant to young women with or at-risk for breast cancer. XRAYS articles rate the quality and relevance of research, the quality of media reporting, and suggest questions that may be useful to address with health care providers. One critical aim of XRAYS is to improve users’ understanding of the limitations of research methods and of media reporting. FORCE charged an independent evaluator with conducting an assessment of XRAYS’ effects on users’ understanding of methodological and reporting issues in media articles about research related to breast cancer. Objective: The objective of this study was to assess whether XRAYS improves readers’ understanding of limitations of study methods and media reporting more than reading media reports alone. Methods: To assess XRAYS’ impact on users’ understanding of limitations in research methods and reporting quality, an independent evaluator conducted a study with 36 volunteer participants who were attending a FORCE conference. Participants were randomly assigned to treatment or control groups. The treatment group read a media report and the corresponding XRAYS article. The control group read only the media report. After reading the materials, participants answered paper and pencil multiple choice questions about methodological limitations of the research discussed in the media report, and about limitations of the reporting itself. Results: Results are summarized in the table. GroupNMean Score (s.d.)t-score (d.f.)PComparison Group1742.85 (19.85)-3.08 (34)<.01XRAYS1965.36 (27.66) After reading the media article, the control group, on average, correctly identified fewer than half of the limitations in study methods or reporting, while, on average, after reading the media article with an XRAYS summary, the treatment group identified about two-thirds of the limitations. The difference between treatment and control groups was statistically significant. Conclusion: Results indicate that XRAYS is effective in supporting users in identifying more limitations in research and reporting than people who read media reports alone. Citation Format: Robin Hilary Pugh Yi, Piri Welcsch, Lisa Rezende, Craig Dearfield Ph.D., Kelly Owens, Susan J. Friedman. Effects of an online educational resource on lay audience understanding of limitations of quality in media reports and research methods [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-15-06.
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