Facing Our Risk Of Cancer Empowered Research Articles

Abstract PO5-08-03: Breastfeeding and Breast Cancer Screening Among Carriers of Pathogenic Variants in BRCA 1 and BRCA 2 and Other High Penetrance Genes: Knowledge and Perspectives

Abstract Objectives: Carriers of pathogenic variants in high penetrance mutations, including BRCA 1 or BRCA 2 face higher lifetime risks of developing breast and tubo-ovarian cancers, and possibly endometrial cancers, than non-carriers. In particular, relative risks are higher among carriers than non-carriers at younger ages, suggesting the value of early initiation of breast cancer screening and the use of sensitive imaging methods, such as magnetic resonance imaging (MRI). Further, breastfeeding appears protective for these three cancers in the general population, and potentially among mutation carriers, albeit based on limited evidence. Given that data related to knowledge and perspectives of carriers about these issues are limited, we surveyed mutation carriers regarding breastfeeding, cancer risk, and the deferral of breast cancer screening coinciding with reproductive events. These data may guide future cancer prevention research and developing of targeted communication campaigns. Methods: Researchers at Mayo Clinic, in collaboration with Facing Our Risk of Cancer Empowered (FORCE) – a large, national non-profit organization that addresses the needs of people and families affected by inherited mutations linked to cancer – designed and conducted a survey using the Mayo Clinic’s external RedCap system. The survey covered genetic testing and results, history of live births and breastfeeding history for mothers, history of risk-reducing surgery, personal cancer history, sources of information about cancer screening, breastfeeding knowledge, and breast cancer screening at various times, including during pregnancy, while breastfeeding, and after weaning. The survey was disseminated through FORCE’s electronic newsletter, website, social media pages, and advocacy partners. Survey responses were collected anonymously and analyzed descriptively using standard descriptive statistics, including frequency and percentages for categorical responses and means (SD) or medians (IQR) for continuously scaled responses. The open-ended responses were analyzed qualitatively using standard qualitative methodology. Results: Respondents included 253 women, of whom 88.7% were U.S. residents and 92.9% were white. The mean age + SD was 47(13) years, 61.7% were parous, with a mean age at first birth of 22.58 (13.16) years. Approximately 60% of women were carriers of mutations in BRCA1 or BRCA2 or both genes and all but two of the remaining women reported mutations in other genes linked to increased cancer risk. At the time of the survey, 92% of women had undergone a mammogram, with first screen at a mean age of 35 (6.49) years, and 85.3% had undergone breast MRI, with first screen at a mean age of 43 (12.39) years. Among 34.3% of participants, their 1st postpartum mammogram occurred >3 years after the birth of their last child and 57% had 1st MRI 3 years postpartum. Preliminarily, our analysis shows that nearly 90% of women were unaware of their mutation status prior to pregnancy and approximately 1/3 did not undergo radiologic screening until 3 years postpartum. While 62.6% of respondents believed that breastfeeding lowers breast cancer risk, 74.2% of participants responded that nursing had no effect on tubo-ovarian cancer risk, and 78.2% considered that nursing did not impact endometrial cancer risk. Discussion and Conclusions: Preliminarily, we conclude that most women in the surveyed population were unaware of their mutation status when pregnant years earlier and many had not undergone screening until years after delivery. Many participants did not consider breastfeeding a potentially protective factor for women’s cancers. These data raise issues about the potential value of discussing genetic testing with women when considering family planning and mutation carriers, addressing complex issues about breast cancer screening while pregnant and breastfeeding. Citation Format: Laura Pacheco-Spann, Mark Sherman, Susan Friedman, Diane Rose, Miriam Levi, Alex Hochwald, Jennifer Ridgeway, Sophia Blumenfeld. Breastfeeding and Breast Cancer Screening Among Carriers of Pathogenic Variants in BRCA 1 and BRCA 2 and Other High Penetrance Genes: Knowledge and Perspectives [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-08-03.

Effectiveness of a tool to increase understanding of breast cancer media articles

Objective: Women aged 45 or younger with breast cancer, or those who are at high risk of breast cancer due to a family history of the disease or genetic test results indicating risk, have distinct health risks and needs. Facing Our Risk of Cancer Empowered (FORCE), a non-profit advocacy organisation, developed an online resource designed to address these needs. Design: In-person surveys were administered to compare baseline and post-test knowledge of two cohorts of 55 volunteer participants. Both groups read a printed media news article related to breast cancer research. The intervention group also read a printed brief review that provided a summary of research findings, and discussion and ratings of research evidence and reporting quality. Setting: Participants were recruited at two FORCE conferences. Data were collected at the conference sites. Method: Pilot and follow-up sample results were pooled and analysed using t-test comparisons. Results: The intervention resource use was associated with a significantly greater increase in knowledge than only reading the media news article. Conclusion: An online tool developed to respond to audience needs, offering ratings of evidence quality and relevance, can help readers to better understand research reporting.

Adopting Consensus Terms for Testing in Precision Medicine.

PURPOSEDespite the well-understood benefits of biomarker and genetic testing in precision medicine, uptake remains low, particularly for patients with low socioeconomic status and minority ethnic backgrounds. Patients report having limited familiarity with testing terminology and may not be able to accurately explain testing's role in treatment decisions. Patient confusion and lack of understanding is exacerbated by a multiplicity of overlapping terms used in communicating about testing. A LUNGevity Foundation–led working group composed of five professional societies, 23 patient advocacy groups, and 19 industry members assessed and recommended specific terms for communicating with patients on testing for tumor characteristics and germline mutations.METHODSMembers completed a precision oncology testing framework analysis (biomarkers, germline variants, testing modalities, biospecimen, and commonly used testing terms) for nine solid tumors and blood cancers. The evaluation was segmented into terms that distinguish between somatic and germline testing. Additional data were captured in a comprehensive survey (1,650 respondents) led by FORCE (Facing Our Risk of Cancer Empowered) on patient preferences on germline testing terms.RESULTSThirty-three terms were noted in patient education related to biomarker, genetic, and genomic testing. Biomarker testing was selected as the preferred term for testing for somatic (acquired) alterations and other biomarkers. Genetic testing for an inherited mutation and genetic testing for inherited cancer risk were selected as the preferred terms for testing for germline variants.CONCLUSIONDemocratizing comprehension about precision oncology testing through intentional use of plain language and common umbrella terminology by oncology health care providers and others in the oncology ecosystem may help improve understanding and communication, and facilitate shared decision making about the role of appropriate testing in treatment decisions and other aspects of oncology care.

Abstract PS7-44: Energetics and lifestyle in inherited syndromes (ELLIE'S study)

Abstract Background: US women have a 1 in 8 lifetime chance of developing breast cancer (BC), with an estimated 10% resulting from a hereditary BC gene mutation. Individuals with mutations in genes such as BRCA1 and BRCA2 have an increased risk of breast and ovarian cancer, as well as other types of cancers. At present, there are more than a dozen other hereditary cancer related genetic mutations that have an associated moderate to high risk of developing cancer. Along with an ability to identify and characterize risk in individuals with a hereditary cancer mutation, there is a need to study modifiable factors such as dietary intake and physical activity in relation to an individual’s risk for cancer. Obesity and poor physical fitness are independently associated with an increased risk of BC and recurrence. There is a paucity of data on the impact of BMI, obesity, and physical activity on primary and recurrent BC in genetic mutation carriers. Women with a moderate penetrance gene mutation are at a high risk for BC and yet are likely to have an impact from modifiable risk factors. The impact of obesity, diet, and physical activity on BC risk and outcomes needs to be further characterized in genetic mutation carriers. Methods: A short REDCap electronic survey was disseminated on social media and through our advocate partner Facing our Risk of Cancer Empowered (FORCE). Eligible participants include males or females, ≥18 years with a hereditary cancer genetic mutation. The survey includes questions regarding personal health, weight, height, metabolic risk factors, reproductive history as well as personal and/or family history of cancer and gene mutation status. In addition, includes a standardized assessment for diet (14-Item Mediterranean Diet Tool) and physical activity (IPAQ and modifiable PAQ). The first 1000 participants are compensated for their time with a $10 e-card. The survey is available in English and Spanish. The Spanish version was developed in collaboration with JUNTOS Kansas City. Objectives: To establish a cohort and describe obesity rates, physical activity, metabolic factors, and nutrition in a cohort of individuals that have an increased risk of cancer due to a hereditary cancer genetic mutation. Results: A total of N = 1,117 surveys have been completed as of June 30, 2020. Of them, 61.2% were removed from final analysis due to incomplete surveys, internet bots, and multiple single-user entries. A total N = 443 surveys have been verified and included in this analysis. Demographics: 98.6% female (n= 437), 94.4% white (n = 418) and median age 46 (range 19 – 77 yrs). Mutations represented in the cohort include: BRCA2 (39.0%), BRCA1 (29.1%), CHEK2 (13.1%), and ATM (5.9%) and < 5%: PALB2, RAD51D, and TP53. Median BMI 24.9 ± 6.06 stdv. BMI 25 to < 30: 26.4% (n = 117). BMI 30 or > 30: 23.47% (n = 104). 61.3% responders are currently trying to lose weight. Attempts at weight loss: No attempts: n = 60 (13.5%), at least 1: n = 55 (12.4%), 2-5: n = 211 (47.6%), 6 or more: n = 117 (26.4%). Limitations to exercise include motivation (26.9%), time (23.5%), not liking exercise (15.6%), and lack of gym memberships (12.4%). 74.9% (n = 332) responded that they are interested in participating in future studies. The Spanish survey was made available 3/3/2020, no responses to date. Conclusion: Individuals harboring a hereditary cancer genetic mutation are interested and willing to participate in research focused on lifestyle modifications and association with cancer risk. Rates of being overweight or obese are high and many have made multiple attempts at weight loss and find common barriers to exercise. Social media is a feasible platform to recruit to a lifestyle research project in a rare population. Additional steps to limit internet trolls, bots, and repetitive responses are necessary but did not impede recruitment. Further effort and collaboration are needed to expand the survey to underrepresented minorities. Citation Format: Lauren E Nye, Kendra Cruz, Sue Friedman, Diane Rose, Christie Befort, Debra K Sullivan, Jill M Hamilton-Reeves, Lisa M Harlan-Williams, Fariba Behbod, Jo Wick, Melinda Irwin, Jennifer Klemp. Energetics and lifestyle in inherited syndromes (ELLIE'S study) [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 PS7-44.

Mechanisms to increase cascade testing in hereditary breast and ovarian cancer: Impact of introducing standardized communication aids into genetic counseling.

Precancer identification of women with hereditary breast and ovarian cancer (HBOC) could prevent 20% of these ovarian cancers. The objective was to determine whether standardized Facing Our Risk of Cancer Empowered (FORCE) materials are acceptable, improve knowledge of HBOC and increase disclosure to family members. A prospective cohort of women with breast or ovarian cancer was identified prior to genetic testing. Subjects completed a baseline knowledge survey and were provided three communication aids. Knowledge, acceptability and communication to family members were reassessed at 6 months and compared to a retrospective cohort who had undergone genetic testing for breast or ovarian cancer prior to the intervention. The primary outcome was increase in HBOC knowledge, requiring 20 pre- and postknowledge scores to detect a 10% difference. Forty women were enrolled. The median age at cancer diagnosis was 50 years and 55% had a family history of breast or ovarian cancer. Though subjects found the resources acceptable, knowledge scores did not improve after their use. Disclosure rates were of no different between cohorts (83% preintervention vs 77% postintervention, P = 0.26) though there was an increase in deleterious mutation carriers, 0% (0/6) preintervention vs 100% (22/22) postintervention. Rates of subsequent testing in relatives were low in both preintervention and postintervention cohorts (0% vs 4.5%). Inclusion of standardized communication tools is acceptable to patients. Knowledge did not improve after their use. In deleterious mutation carriers, disclosure rates increased postintervention.

Abstract P1-15-06: Effects of an online educational resource on lay audience understanding of limitations of quality in media reports and research methods

Abstract 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.

Abstract P1-15-07: Effectiveness of an online educational resource in increasing lay users' understanding of information in media reports on breast cancer research

Abstract 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.

Results of a pilot test of effects of an online resource on lay audience understanding of media reports on breast cancer research

Objective: This study aimed to assess the effects of eXamining Relevance of Articles to Young Survivors (XRAYS), an online resource that provides brief articles discussing recent research relevant to young women with or at risk for breast cancer, on users’ knowledge about information covered in media reports. An evaluator also assessed the degree to which XRAYS facilitated awareness of recent research findings and how users recommended improving the resource. Design: Participants were randomly assigned to an intervention condition, whose members read original news reports and the corresponding XRAYS review or to a control condition, whose members read only original news reports. Participants also discussed XRAYS’ utility and cultural appropriateness. Setting: Data were collected in a meeting room at a Facing Our Risk of Cancer Empowered (FORCE) conference. All participants were registered for a conference for women with or at risk for genetic breast or ovarian cancer. Method: Participants answered multiple choice questions about research before reading the assigned materials and again after reading the assigned materials. T-tests were used to assess pre-post-test change for both groups and to compare groups’ change in knowledge. Results: Both groups improved between pre- and post-test. The treatment group increased knowledge significantly more than the control group. Focus group results indicate that XRAYS is a valuable resource for identifying relevant recent research findings and for explaining limitations in research methods, relevance, and reporting quality. Results also indicate that it is critical for XRAYS and similar resources to be brief, use non-technical language and address the most recent trends in media coverage. Conclusion: Online resources that use plain language to help users to interpret science reporting critically help meet an important health education need.

Abstract P6-14-08: Effects of online resource to support laypersons' understanding of media reports on breast cancer research

Abstract Rationale: Breast cancer is the second leading cause of death among women ages 20 to 39. Approximately 7% of women with breast cancer are diagnosed before age 40. Women age 45 or younger with breast cancer or who are at high risk for breast cancer have distinct health risks and different needs from their older counterparts. Breast cancer risk, etiology, treatment, outcomes, and related survivorship and quality of life concerns often vary between younger and older women. Diagnosis at a young age is associated with higher risk of recurrence, second malignancy, mortality, morbidity, and quality of life issues. Young women with or at high risk for breast cancer need 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 XRAYS (eXamining Relevance of Articles to Young Survivors). 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 scientific research and the quality of media reporting on that research. Objectives: The objectives of the current project were to: 1) conduct an initial test of XRAYS's effectiveness in improving users' knowledge about information covered in media reports 2) assess the degree to which XRAYS facilitates awareness of recent research findings 3) Obtain feedback regarding XRAYS' utility and appeal 4) Use results to inform XRAYS development Methods and Results: An independent evaluator randomly assigned 21 participants to a treatment (read media article plus XRAYS review) or control (read media article only) condition. Each respondent completed multiple choice pre- and post-intervention tests about information contained in one of three media reports (Two respondents took their written surveys with them. Statistical analyses were conducted on data from the remaining respondents). Results demonstrate that both groups improved between pre- and post-test. The treatment group increased knowledge significantly more than the control group. Table 1.Results of within group comparisonsGroupNPre-test Mean, Percentage Correct Responses (s.d.)Post-test Mean, Percentage Correct Responses (s.d.)t-score (d.f.)PComparison Group857.5 (12.82)72.5 (23.75)-2.05 (7)n.s.XRAYS1152.73 (20.54)87.27 (16.18)-7.29 (10)<.001 Table 2.Results of between group comparisonGroupNMean Change Score (s.d.)t-score (d.f.)PComparison Group815.00 (20.70)-2.34 (18)<.05XRAYS1134.55 (15.72) Participants also contributed to one of three focus groups. Focus group results indicate that XRAYS is a valuable resource for identifying relevant recent research findings and for explaining limitations in research methods, relevance, and reporting quality. Results also indicate that it is critical for XRAYS to be brief, use non-technical language, and address the most recent trends in media coverage. FORCE is using focus group feedback to guide decisions about XRAYS content, format, and dissemination. FORCE will collect additional data to confirm test findings and to assess effects of XRAYS on understanding of evidence quality. Citation Format: Pugh Yi RH, Rezende L, Dearfield CT, Welcsh PL, Friedman SJ. Effects of online resource to support laypersons' understanding of media reports on breast cancer research [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P6-14-08.

"Second-Class Status?" Insight into Communication Patterns and Common Concerns Among Men with Hereditary Breast and Ovarian Cancer Syndrome.

Hereditary breast and ovarian cancer syndrome (HBOC) is a cancer predisposition syndrome that affects both men and women, with more significant cancer risk elevations in women. Dissemination patterns regarding familial genetic risk information among females with HBOC are fairly well defined, but knowledge about how males share this information is limited. We interviewed 21 people primarily Ashkenazi Jewish men who were accrued via listserv email through Facing Our Risk of Cancer Empowered (FORCE). Interviews focused on family cancer history, experiences with cancer and genetic testing, motivations to pursue genetic testing and subsequently disclose genetic test results, information-sharing patterns, health care provider response, and participants' emotional support systems. The interviews were transcribed in their entirety, coded, and analyzed based on recurring themes. Eighteen transcripts were used for the analysis. Results were classified into five main themes. Participants (n = 8) were most concerned about cancer risk for their children and female family members, and most (n = 11) mentioned that HBOC provides them increased personal awareness, but has a negligible impact on their life overall (n = 9). Men (n = 11) were interested in a male-focused support group to discuss HBOC and gain knowledge and information. Participants (n = 9) took on active and open communication roles with family members and health care providers. The majority of participants (n = 14) discussed the need for knowledge and awareness among the health care community and general population regarding male HBOC risks. This study serves as a pilot study and provides important and novel insights into psychosocial impacts, communication patterns, encounters with health care professionals, and expressed needs of males with HBOC.

XRAYS (eXamining Relevance of Articles to Young Survivors) Program Survey of Information Needs and Media Use by Young Breast Cancer Survivors and Young Women at High-Risk for Breast Cancer

ABSTRACTWomen age 45 years or younger with breast cancer, or who are at high-risk for breast cancer due to previously having the disease or to genetic risk, have distinct health risks and needs from their older counterparts. Young women frequently seek health information through the Internet and mainstream media, but often find it does not address their particular concerns, that it is difficult to evaluate or interpret, or even misleading. 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. To assure that the XRAYS program is responsive to the community’s needs, FORCE launched a web-based survey to assess where young women seek information about breast cancer, and to learn their unmet information needs. A total of 1,178 eligible women responded to the survey. In general, the breast cancer survivors and high-risk women between ages 18–45 years who responded to this survey, are using multiple media sources to seek information about breast cancer risk, prevention, screening, and treatment. They place trust in several media sources and use them to inform their medical decisions. Only about one-third of respondents to this survey report discussing media sources with their health care providers. Current survey results indicate that, by providing credible information on the quality of evidence and reporting in media reports on cancer, XRAYS is addressing a key need for health information. Results suggest that it will be useful for XRAYS to offer reviews of articles on a broad range of topics that can inform decisions at each stage of risk assessment and treatment.

Multi-disciplinary summit on genetics services for women with gynecologic cancers: A Society of Gynecologic Oncology White Paper

ObjectiveTo assess current practice, advise minimum standards, and identify educational gaps relevant to genetic screening, counseling, and testing of women affected by gynecologic cancers. MethodsThe Society of Gynecologic Oncology (SGO) organized a multidisciplinary summit that included representatives from the American College of Obstetricians and Gynecologists (ACOG), the American Society Clinical Oncology (ASCO), the National Society of Genetic Counselors (NSGC), and patient advocacy groups, BrightPink and Facing our Risk of Cancer Empowered (FORCE). Three subject areas were discussed: care delivery models for genetic testing, barriers to genetic testing, and educational opportunities for providers of genetic testing. ResultsThe group endorsed current SGO, National Comprehensive Cancer Network (NCCN), and NSGC genetic testing guidelines for women affected with ovarian, tubal, peritoneal cancers, or DNA mismatch repair deficient endometrial cancer. Three main areas of unmet need were identified: timely and universal genetic testing for women with ovarian, fallopian tube, and peritoneal cancers; education regarding minimum standards for genetic counseling and testing; and barriers to implementation of testing of both affected individuals as well as cascade testing of family members. Consensus building among all stakeholders resulted in an action plan to address gaps in education of gynecologic oncology providers and delivery of cancer genetics care.

Abstract P4-18-02: Peer navigation for people affected by hereditary breast, ovarian and related cancers: Results from the first six months

Abstract People affected by hereditary breast, ovarian, and related cancers (HBOC) due to a mutation in BRCA, or another gene that increases cancer risk, have unique support and information needs and face medical decisions that differ from survivors of sporadic breast cancer and from people at average risk for these cancers. Finding peers to talk to can be challenging, especially for people living outside of metropolitan areas. FORCE (Facing Our Risk of Cancer Empowered) developed our Peer Navigation Program to provide personalized, expert-reviewed resources and 1:1 support for people affected by HBOC, including breast cancer survivors and people at high risk for breast cancer due to a mutation in BRCA or another gene that increases cancer risk. The program utilizes a custom database that matches individuals seeking support with trained Peer Navigators who have faced similar medical challenges and decisions. Users complete an intake form, providing basic demographic, medical, and geographic information in order to match them as closely as possible to a peer volunteer. The user selects from 21 specific topics of interest to them. This generates a personalized, expert-reviewed resource guide on each selected topics, which individuals can use to make informed, shared decisions with their healthcare providers. Trained Peer Navigators conduct one-hour phone calls with program users to discuss the personalized resources and provide non-judgmental emotional support. Our goal is to match users and complete the navigation process within one week from the time they submitted their intake form. After a navigation session, both the Peer Navigator and the program participant are asked to fill out an evaluation. All Peer Navigator volunteers undergo a written and telephone interview to assure their readiness to help others. Once they pass this screening process, they complete a series of online VolunteerFORCE Academy training webinars and complete a profile form providing information about their demographics, personal and medical situation, and medical decisions. Volunteers receive training on the following: FORCE 101, HBOC 101, Active Listening Skills and Peer Navigation instructions. All webinars have been reviewed and approved by a member of FORCE's Scientific Advisory Board and our Vice President of Education. The webinars stress several important themes, including: encouraging users to discuss information with medical experts, avoiding dispensing of personal or medical advice, and maintaining a non-judgmental perspective. We have 104 trained peer navigators, both male and female, ranging in age from 21 – 73. Both cancer survivors, as well as high-risk individuals are represented. Peer volunteers come from diverse backgrounds and geographic locations, and have made a variety of medical decisions about genetic testing, cancer screening, chemoprevention, and risk-reducing surgeries. The program launched in April 2016. We will present results from post-call evaluation surveys completed from April 1, 2016 through September 30, 2016. Data on most commonly requested topics, user satisfaction, ease of use, and intention to use the information in shared decision-making with their health care provider will be presented. Citation Format: Rezende LF, Cohen S, Rose D, Friedman SJ. Peer navigation for people affected by hereditary breast, ovarian and related cancers: Results from the first six months [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P4-18-02.

Abstract P5-10-03: XRAYS (eXamining Relevance of Articles to Young Survivors) program survey of information needs and media use by young breast cancer survivors and young women at high risk for breast cancer

Abstract Women age 45 or under with breast cancer, or who are at high risk for breast cancer, have distinct health risks and needs when compared to their older counterparts. Young women with breast cancer or at high risk for breast cancer need evidence-based, high-quality information to help them make informed decisions about their specific health needs. Interpreting media reports on research findings, including determining the study implications for younger women is often challenging. To help women better understand media coverage of new research, Facing Our Risk of Cancer Empowered (FORCE) developed the CDC-funded XRAYS (eXamining Relevance of Articles to Young Survivors) program. To assure that the XRAYS program is responsive to the community's needs, FORCE launched a survey to assess where young women turn for information about breast cancer and to identify their information needs. The survey examines: how frequently women visit various media sources and health- or cancer-related websites for information on breast cancer screening, treatment, surgery, prevention, genetics, or survivorship; how much the women trust these information sources; whether they have ever tried to share media articles with their health care team and how the team received the information; and at what point(s) during the process of screening, diagnosis, treatment, survivorship and/or risk management respondents actively seek out information from the media. FORCE launched the survey nationally through its network of 50 outreach groups, partner organizations that serve young breast cancer survivors, and via a social media campaign targeting women age 45 and under with, or at high risk for breast cancer. The survey was open March 15 - June 30, 2015. We will report results from over 800 women, age 45 or younger, including those with breast cancer, who have previously had breast cancer, or who are at high risk for breast cancer. Analysis will determine response frequencies and whether information needs and utilization correlate with key demographic variables such as race/ethnicity, education, and income level. We will use correlation and multiple regression analysis to assess patterns in the types of information needed and channels where information is sought. These results will ensure XRAYS materials and dissemination efforts are efficient and responsive to the young breast cancer population's needs, and will inform the broader medical, media and patient advocacy communities about the distinct information needs of this group. Citation Format: Rezende LF, Huynh J, Kramer K, Cranmer M, Schlager L, Pugh-Yi R, Friedman S. XRAYS (eXamining Relevance of Articles to Young Survivors) program survey of information needs and media use by young breast cancer survivors and young women at high risk for breast cancer. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P5-10-03.

Abstract P2-09-09: Risk-reducing surgery and cancer-related distress among female BRCA1 and BRCA2 mutation carriers

Abstract Background: Distress levels among female BRCA1 and BRCA2 mutation carriers can be similar to levels reported among breast cancer patients. However, there is a lack of data on long-term psychosocial functioning, and it is not known if uptake of risk-reducing surgery influences long-term cancer related distress in women with a BRCA mutation who are unaffected with cancer. The objective of this study was to evaluate long-term cancer-related distress in women with a BRCA mutation, and to evaluate predictors of distress, including uptake of cancer risk reducing surgery. Methods: Female BRCA1 or BRCA2 mutation carriers, ages 25-55, and without cancer were eligible to complete the survey online. A validated instrument, Impact of Events Scale (IES)-Revised (Horowitz 1979, Weis & Marmar 1995; 0-80 overall scale), was used to assess current levels of cancer risk-related psychological distress. Respondents were recruited through the Facing Our Risk of Cancer Empowered (FORCE) advocacy organization, which includes women at high risk of breast cancer. This interim analysis is part of a larger multi-center patient preference study of BRCA mutation carriers designed to assess women's willingness to adopt hypothetical treatments to prevent breast cancer. Linear regression was used to evaluate predictors of IES distress levels. Results: Between January and April 2015, 259 women completed the survey. The mean age of the participants was 41 years, and the mean time since receipt of genetic test results was 3.5 years (range 0-16; median 2 years). One hundred thirty-six (52%) women elected for prophylactic bilateral mastectomy (PBM), 139 (54%) elected for bilateral salpingo oophorectomy (BSO) (93 [36%] women had both surgeries), and 77 (30%) had not undergone risk-reducing surgery. The mean total IES score was 15.1 (range 0-72; median 11). Overall, 54 (21%) women reported moderate or severe cancer-related distress, and those who had undergone risk-reducing surgery reported lower perceived risk of developing breast cancer. Results to date indicate that shorter time since notification of mutation status, not having PBM (with or without BSO) (table), and not completing post-secondary education were independent predictors of higher IES distress scores. IES severityNo prophylactic surgeryPBM onlyBSO onlyPBM and BSOn (%)77434693Subclinical27 (35)23 (54)16 (35)44 (47)Mild26 (34)13 (30)21 (46)35 (38)Moderate18 (23)5 (12)6 (13)11 (12)Severe6 (8)2 (5)3 (6)3 (3) Conclusions: This study measured cancer-related distress in a large population of women with BRCA mutations who participate in the FORCE online support community. Higher levels of distress were associated with not having PBM and more recent genetic test disclosure. These findings are specific to a more informed community of women with high levels of understanding of cancer risk than may be seen in the clinical setting. Citation Format: Liede A, Fairchild A, Friedman S, Amelio J, Hallett DC, Mansfield CA, Metcalfe KA. Risk-reducing surgery and cancer-related distress among female BRCA1 and BRCA2 mutation carriers. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P2-09-09.

Acceptability of prophylactic salpingectomy with delayed oophorectomy as risk-reducing surgery among BRCA mutation carriers

ObjectiveGiven the emerging evidence for the fimbria as the site of origin for many serous carcinomas in BRCA mutation carriers, consideration is being given in studying prophylactic salpingectomy with delayed oophorectomy (PSDO) as a risk-reducing surgery. We aimed to determine the interest in a study of PSDO among these women. MethodsWe evaluated the results of an online survey conducted by Facing Our Risk of Cancer Empowered (FORCE), a patient advocacy group, from October 2010 to August 2012. Premenopausal BRCA mutation carriers with no history of ovarian cancer or prior bilateral salpingo-oophorectomy (BSO) were included. ResultsOf the 204 women meeting inclusion criteria, median age was 35years, 92.5% were white, 25.7% were Jewish, and 16.7% had a history of breast cancer. Overall, 34.3% reported interest in a study of salpingectomy, 35.3% were unsure, and 30.4% were not interested in the study. Women noted the possibility of lowering ovarian cancer risk without menopause as a compelling reason to participate (83.8%). Reasons for not participating in a salpingectomy study included surgical complications (46.6%), potential ovarian damage (42.2%), planning BSO soon (32.4%), and surgical costs (32.8%). Acceptable study risks included the need for two surgeries (77.2%), possibility of not lowering ovarian cancer risk (68%), and disruption of ovarian blood supply (66.5%). ConclusionsOne-third of BRCA mutation carriers indicated definite interest in a PSDO study. Potential study risks were acceptable to most women. These findings suggest that patient accrual for a clinical trial of prophylactic salpingectomy with delayed oophorectomy is possible.

Interest of individuals from BRCA families to participate in research studies focused on male BRCA carriers

Although men and women are equally likely to carry a mutation in the BRCA1 and BRCA2 (BRCA) genes, the clinical significance of mutations in men remains incompletely defined. We sought evaluate interest of individuals from BRCA families to participate in a research study focused on men from BRCA families. Through an anonymous survey posted on the website of the BRCA patient advocacy organization, facing our risk of cancer empowered (FORCE), data was collected over a 21 month period (August 2010-June 2012) from members of BRCA families. The survey was completed by 405 individuals with known BRCA mutations, including 150 males and 232 females. The median age of survey respondents was 49 years (50 years for males and 48 years for females). Overall, 84% of survey respondents indicated prior BRCA mutation testing (95.2% females, 67.3% males). For the overall group of survey respondents, 84% (86% females, 84% males) indicated they would tell their male relatives about a research study focused on high risk men from BRCA families, and 53% (39% females, 74% males) thought that their male relatives would be interested in participating in such a study. Despite limited studies focused on men from BRCA mutation positive families, our survey suggests that both male and female family members are highly interested in focused on male BRCA mutation carriers. The importance of further studying this topic is underscored by emerging literature that suggest cancer surveillance and treatment decisions may improve outcomes in men with BRCA mutations.

Learning About a Twist in the Road: Perspectives of At-Risk Relatives Learning of Potential for Cancer

To describe the experiences of women who accessed the Facing Our Risk of Cancer Empowered (FORCE) Web site after learning of a family BRCA1 or BRCA2 mutation. Interpretive phenomenology based on Heideggerian hermeneutics. Telephone interviews of women living in the United States who accessed FORCE. A purposive sample of eight women aged 19-47 years. Team interpretation using Diekelmann, Allen, and Tanner's seven-step process. Experience of family communication of BRCA results. Women described (a) finding out, (b) unexpected feelings, (c) mulling it over, (d) finding support, (e) seeking direction from healthcare professionals, (f) redefining future possibilities, and (g) navigating a twist in the road. Many healthcare professionals are not prepared to address genetic risk. Some women who learned of potential risk experienced turmoil as potential risk for cancer unfolded. They felt isolated and unsupported by healthcare providers. They desired assistance in navigating the healthcare system to protect their future health. Healthcare professionals have important roles in (a) assessing support networks of individuals seeking BRCA testing, (b) providing anticipatory guidance on risk communication, (c) remaining sensitive to the impact of seeing cancer as a future possibility, (d) allowing time for individuals to process such news, (e) assessing the psychosocial impact of news of a family BRCA mutation, and (f) providing referrals for support and health needs. Women desire decision support from healthcare providers. Future research should examine cancer risk communication in diverse groups of women.

Health literacy, numeracy, and interpretation of graphical breast cancer risk estimates

Objective Health literacy and numeracy are necessary to understand health information and to make informed medical decisions. This study explored the relationships among health literacy, numeracy, and ability to accurately interpret graphical representations of breast cancer risk. Methods Participants ( N = 120) were recruited from the Facing Our Risk of Cancer Empowered (FORCE) membership. Health literacy and numeracy were assessed. Participants interpreted graphs depicting breast cancer risk, made hypothetical treatment decisions, and rated preference of graphs. Results Most participants were Caucasian (98%) and had completed at least one year of college (93%). Fifty-two percent had breast cancer, 86% had a family history of breast cancer, and 57% had a deleterious BRCA gene mutation. Mean health literacy score was 65/66; mean numeracy score was 4/6; and mean graphicacy score was 9/12. Education and numeracy were significantly associated with accurate graph interpretation ( r = 0.42, p < 0.001 and r = 0.65, p < 0.001, respectively). However, after adjusting for numeracy in multivariate linear regression, education added little to the prediction of graphicacy ( r 2 = 0.41 versus 0.42, respectively). Conclusion In our highly health-literate population, numeracy was predictive of graphicacy. Practice implications Effective risk communication strategies should consider the impact of numeracy on graphicacy and patient understanding.

Women with BRCA1 or BRCA2 Mutations Renegotiating a Post‐Prophylactic Mastectomy Identity: Self‐Image and Self‐Disclosure.

The Facing Our Risk of Cancer Empowered (FORCE) website is devoted to women at risk for hereditary breast and ovarian cancers. One of the most frequently discussed topics on the archived messaged board has been prophylactic mastectomy (PM) for women with a BRCA1/2 mutation. We reviewed the messages, over a 4 year period, of 21 high risk women and their "conversational" partners who originally posted on a thread about genetic testing, genetic counseling and family history. We used a qualitative research inductive process involving close reading, coding and identification of recurrent patterns, relationships and processes in the data. The women sought emotional support, specific experiential knowledge and information from each other. They frequently found revealing their post PM status problematic because of possible negative reactions and adopted self-protective strategies of evasion and concealment outside of their web-based community. The FORCE message board was considered to be a safe place in which the women could be truthful about their choices and feelings. Results are discussed in terms of Goffman's concepts "stigma" and "disclosure" and Charmaz's concepts "interruptions," "intrusions" and a "dreaded future."