Breast Cancer Risk Communication Research Articles

Co-Creation of Breast Cancer Risk Communication Tools and an Assessment of Risk Factor Awareness: A Qualitative Study of Patients and the Public in India.

Low awareness of BC and its associated risk factors causes delays in diagnosis and impacts survival. It is critical to communicate BC risk to patients in a format that they are easily able to understand. Our study aim was to develop easy-to-follow transmedia prototypes to communicate BC risk and evaluate user preferences, alongside exploring awareness of BC and its risk factors. Prototypes of transmedia tools for risk communication were developed with multidisciplinary input. A qualitative in-depth online interview study was undertaken using a pre-defined topic guide of BC patients (7), their relatives (6), the general public (6), and health professionals (6). Interviews were analyzed using a thematic approach. Most participants preferred pictographic representations (frequency format) of lifetime risk and risk factors and storytelling using short animations and comic strips (infographics) for communicating genetic risk and testing: "In a short time, they explained it very well, and I liked it". Suggestions included minimizing technical terminology, decreasing the delivery speed, "two-way dialogue", and using local "language for different locations". There was low awareness of BC, with some understanding of age and hereditary risk factors but limited knowledge of reproductive factors. Our findings support use of multiple context-specific multimedia tools in communicating cancer risk in an easy-to-understand way. The preference for storytelling using animations and infographics is a novel finding and should be more widely explored.

Feasibility and Acceptability of Personalized Breast Cancer Screening (DECIDO Study): A Single-Arm Proof-of-Concept Trial.

The aim of this study was to assess the acceptability and feasibility of offering risk-based breast cancer screening and its integration into regular clinical practice. A single-arm proof-of-concept trial was conducted with a sample of 387 women aged 40–50 years residing in the city of Lleida (Spain). The study intervention consisted of breast cancer risk estimation, risk communication and screening recommendations, and a follow-up. A polygenic risk score with 83 single nucleotide polymorphisms was used to update the Breast Cancer Surveillance Consortium risk model and estimate the 5-year absolute risk of breast cancer. The women expressed a positive attitude towards varying the frequency of breast screening according to individual risk and, especially, more frequently inviting women at higher-than-average risk. A lower intensity screening for women at lower risk was not as welcome, although half of the participants would accept it. Knowledge of the benefits and harms of breast screening was low, especially with regard to false positives and overdiagnosis. The women expressed a high understanding of individual risk and screening recommendations. The participants’ intention to participate in risk-based screening and satisfaction at 1-year were very high.

Women\u2019s health behaviour change after receiving breast cancer risk estimates with tailored screening and prevention recommendations

BackgroundThe Predicting Risk of Cancer at Screening (PROCAS) study provided women who were eligible for breast cancer screening in Greater Manchester (United Kingdom) with their 10-year risk of breast cancer, i.e., low (≤1.5%), average (1.5–4.99%), moderate (5.-7.99%) or high (≥8%). The aim of this study is to explore which factors were associated with women’s uptake of screening and prevention recommendations. Additionally, we evaluated women’s organisational preferences regarding tailored screening.MethodsA total of 325 women with a self-reported low (n = 60), average (n = 125), moderate (n = 80), or high (n = 60) risk completed a two-part web-based survey. The first part contained questions about personal characteristics. For the second part women were asked about uptake of early detection and preventive behaviours after breast cancer risk communication. Additional questions were posed to explore preferences regarding the organisation of risk-stratified screening and prevention. We performed exploratory univariable and multivariable regression analyses to assess which factors were associated with uptake of primary and secondary breast cancer preventive behaviours, stratified by breast cancer risk. Organisational preferences are presented using descriptive statistics.ResultsSelf-reported breast cancer risk predicted uptake of (a) supplemental screening and breast self-examination, (b) risk-reducing medication and (c) preventive lifestyle behaviours. Further predictors were (a) having a first degree relative with breast cancer, (b) higher age, and (c) higher body mass index (BMI). Women’s organisational preferences for tailored screening emphasised a desire for more intensive screening for women at increased risk by further shortening the screening interval and moving the starting age forward.ConclusionsBreast cancer risk communication predicts the uptake of key tailored primary and secondary preventive behaviours. Effective communication of breast cancer risk information is essential to optimise the population-wide impact of tailored screening.

Effect of a Randomized Trial of a Web-Based Intervention on Patient-Provider Communication About Breast Density.

Background: Breast density increases breast cancer risk and decreases mammographic detection. We evaluated a personalized web-based intervention designed to improve breast cancer risk communication between women and their providers. Materials and Methods: This was a secondary outcome analysis of an online randomized trial. Women aged 40-69 years were randomized, February 2017-May 2018, to a control (n = 503) versus intervention website (n = 492). The intervention website included information about breast density, personalized breast cancer risk, chemoprevention, and magnetic resonance imaging. Participants self-reported communication about density with providers (yes/no) at 6 weeks and 12 months. We used logistic regression with generalized estimating equations to evaluate the association of study arm with density communication. In secondary analyses, we tested if the intervention was associated with indicators of patient activation (breast cancer worry, perceived risk, or health care use). Results: Women (mean age 62 years) in the intervention versus control arm were 2.39 times (95% confidence interval [CI] = 1.37-4.18) more likely to report density communication at 6 weeks; this effect persisted at 12 months (odds ratio [OR] = 1.71, 95% CI = 1.25-2.35). At 6 weeks, this effect was only significant among women who reported (OR = 3.23, 95% CI = 1.24-8.40) versus did not report any previous density discussions (OR = 1.64, 95% CI = 0.83-3.26). A quarter of women in each arm never had a density conversation at any time during the study. Conclusions: Despite providing personalized density and risk information, the intervention did not promote density discussions between women and their providers who had not had them previously. This intervention is unlikely to be used clinically to motivate density conversations in women who have not had them before. Clinical trial registration number NCT03029286.

From Probands to Relatives

The genetic risk communication from proband to relatives varies from family to family, and patients often need support with the communication of genetic test results and making decisions to manage hereditary cancer risks. The aim of this study was to characterize the communication of BRCA1 or BRCA2 (BRCA1/2) genetic risk from proband to first-degree relatives (FDRs) using a social network framework. We characterized network and nonnetwork factors to explore their association with which FDRs were told about the genetic risk and whether or not relatives underwent genetic testing. Ninety-two female probands with hereditary breast and ovarian cancer who have confirmed BRCA1/2 mutations participated in the study. Communication of hereditary breast and ovarian cancer risk was assessed between 92 probands and their 417 FDRs. Of 92 probands, 94.5% (n = 87) communicated their genetic test result to at least one of their FDRs. Of FDRs older than 18 years, 19.9% (n = 72) have genetic testing. Emotional closeness, educational level of the proband, and relative's age were significantly associated with communicating test results with FDRs. Communication of genetic risk with the FDRs after having a BRCA1/2 gene-mutation-positive test result was high in this group of cancer patients. However, the rate of genetic testing among FDRs was low. Probands' educational level and age of relatives for cascade genetic screening should be considered during counseling. Interventions to support women with BRCA1/2 mutations during the communication process and their family members' engagement in testing and risk-reducing strategies are needed.

Characteristics Associated with Participation in ENGAGED 2 - A Web-based Breast Cancer Risk Communication and Decision Support Trial.

We evaluated demographic and clinical characteristics associated with participation in a clinical trial testing the efficacy of an online tool to support breast cancer risk communication and decision support for risk mitigation to determine the generalizability of trial results. Eligible women were members of Kaiser Permanente Washington aged 40-69 years with a recent normal screening mammogram, heterogeneously or extremely dense breasts and a calculated risk of > 1.67% based on the Breast Cancer Surveillance Consortium 5-year breast cancer risk model. Trial outcomes were chemoprevention and breast magnetic resonance imaging by 12-months post-baseline. Women were recruited via mail with phone follow-up using plain language materials notifying them of their density status and higher than average breast cancer risk. Multivariable logistic regression calculated independent odds ratios (ORs) for associations between demographic and clinical characteristics with trial participation. Of 2,569 eligible women contacted, 995 (38.7%) participated. Women with some college (OR = 1.99, 95% confidence interval [CI] 1.34-2.96) or college degree (OR = 3.35, 95% CI 2.29-4.90) were more likely to participate than high school-educated women. Race/ethnicity also was associated with participation (African-American OR = 0.50, 95% CI 0.29-0.87; Asian OR = 0.22, 95% CI 0.12-0.41). Multivariate adjusted ORs for family history of breast/ovarian cancer were not associated with trial participation. Use of plain language and potential access to a website providing personal breast cancer risk information and education were insufficient in achieving representative participation in a breast cancer prevention trial. Additional methods of targeting and tailoring, potentially facilitated by clinical and community outreach, are needed to facilitate equitable engagement for all women.

Risk estimation, anxiety, and breast cancer worry in women at risk for breast cancer: A single-arm trial of personalized risk communication.

Elevated anxiety and breast cancer worry can impede mammographic screening and early breast cancer detection. Genetic advances and risk models make personalized breast cancer risk assessment and communication feasible, but it is unknown whether such communication of risk affects anxiety and disease-specific worry. We studied the effect of a personalized breast cancer screening intervention on risk perception, anxiety, and breast cancer worry. Women with a normal mammogram but elevated risk for breast cancer (N = 122) enrolled in the Athena Breast Health risk communication program were surveyed before and after receiving a letter conveying their breast cancer risk and a breast health genetic counselor consultation. We compared breast cancer risk estimation, anxiety, and breast cancer worry before and after risk communication and evaluated the relationship of anxiety and breast cancer worry to risk estimation accuracy. Women substantially overestimated their lifetime breast cancer risk, and risk communication somewhat mitigated this overestimation (49% pre-intervention, 42% post-intervention, 13% Gail model risk estimate, P < .001). Both general anxiety and breast cancer worry declined significantly after risk communication in women with high baseline anxiety. Baseline anxiety and breast cancer worry were essentially unrelated to risk estimation accuracy, but risk communication increased alignment of worry with accuracy of risk assessment. Personalized communication about breast cancer risk was associated with modestly improved risk estimation accuracy in women with relatively low anxiety and less anxiety and breast cancer worry in women with higher anxiety. We detected no negative consequences of informing women about elevated breast cancer risk.

Towards Prevention of Breast Cancer: What Are the Clinical Challenges?

The dramatic increase in breast cancer incidence compels a paradigm shift in our preventive efforts. There are several barriers to overcome before prevention becomes an established part of breast cancer management. The objective of this review is to identify the clinical challenges for improved breast cancer prevention and discuss current knowledge on breast cancer risk assessment methods, risk communication, ethics, and interventional efforts with the aim of covering the aspects relevant for a breast cancer prevention trial. Herein, the following five areas are discussed: (i) Adequate tools for identification of women at high risk of breast cancer suggestively entitled Prevent! Online. (ii) Consensus on the definition of high risk, which is regarded as mandatory for all risk communication and potential prophylactic interventions. (iii) Risk perception and communication regarding risk information. (iv) Potential ethical concerns relevant for future breast cancer prevention programs. (v) Risk-reducing programs involving multileveled prevention depending on identified risk. Taken together, devoted efforts from both policy makers and health care providers are warranted to improve risk assessment and risk counseling in women at risk for breast cancer to optimize the prevention of breast cancer. Cancer Prev Res; 11(5); 255-64. ©2018 AACR.

How do we increase uptake of tamoxifen and other anti-estrogens for breast cancer prevention?

Several randomized controlled trials of anti-estrogens, such as tamoxifen and aromatase inhibitors, have demonstrated up to a 50–65% decrease in breast cancerincidence among high-risk women. Approximately 15% of women, age 35–79 years, in the U.S. meet criteria for breast cancer preventive therapies, but uptake of these medications remain low. Explanations for this low uptake includelack of awareness of breast cancer risk status, insufficient knowledge about breast cancer preventive therapies among patients and physicians, and toxicity concerns. Increasing acceptance of pharmacologic breast cancer prevention will require effective communication of breast cancer risk, accurate representation about the potential benefits and side effects of anti-estrogens, targeting-specific high-risk populations most likely to benefit from preventive therapy, and minimizing the side effects of current anti-estrogens with novel administration and dosing options. One strategy to improve the uptake of chemoprevention strategies is to consider lessons learned from the use of drugs to prevent other chronic conditions, such as cardiovascular disease. Enhancing uptake and adherence to anti-estrogens for primary prevention holds promise for significantly reducing breast cancer incidence, however, this will require a significant change in our current clinical practice and stronger advocacy and awareness at the national level.

What Health Care Providers Know and How They Communicate Breast Cancer Risk to Patients

Racial disparities in breast cancer mortality continue, partly due to higher prevalence of an aggressive breast cancer subtype called basal-like breast cancer (BBC) in African-Americans. Health care providers (HCPs) are uniquely positioned to discuss cancer risk and prevention with patients. We investigated breast cancer knowledge and risk communication among HCPs to identify factors that influenced communication with patients. Interviews were conducted with 34 HCPs in North Carolina. We found limited evidence of breast cancer risk education, and specific subtypes of breast cancer were not discussed. Barriers to communication about prevention include limited time, perceived patient receptivity and education level, and scientific misinformation. Factors that prompted discussions included patient characteristics (age, race, and socioeconomic status). To broaden the conversation, HCPs must receive and communicate more accurate information on breast cancer risk. Given these barriers to breast cancer education, additional opportunities to intervene with high-risk populations must be identified.

Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families.

Scientific advances have allowed the development of multiplex gene-panels to assess many genes simultaneously in women who have tested negative for BRCA1/2. We examined correlates of interest in testing for genes that confer modest and moderate breast cancer risk and risk communication preferences for women from BRCA negative families. Female first-degree relatives of breast cancer patients who tested negative for BRCA1/2 mutations (N=149) completed a survey assessing multiplex genetic testing interest and risk communication preferences. Interest in testing was high (70%) and even higher if results could guide risk-reducing behavior changes such as taking medications (79%). Participants preferred to receive genomic risk communications from a variety of sources including: primary care physicians (83%), genetic counselors (78%), printed materials (71%) and the web (60%). Factors that were independently associated with testing interest were: perceived lifetime risk of developing cancer (odds ratio (OR)=1.67: 95% confidence interval (CI) 1.06-2.65) and high cancer worry (OR=3.12: CI 1.28-7.60). Findings suggest that women from BRCA1/2 negative families are a unique population and may be primed for behavior change. Findings also provide guidance for clinicians who can help develop genomic risk communications, promote informed decision making and customize behavioral interventions.

Why Breast Cancer Risk by the Numbers Is Not Enough: Evaluation of a Decision Aid in Multi-Ethnic, Low-Numerate Women.

BackgroundBreast cancer risk assessment including genetic testing can be used to classify people into different risk groups with screening and preventive interventions tailored to the needs of each group, yet the implementation of risk-stratified breast cancer prevention in primary care settings is complex.ObjectiveTo address barriers to breast cancer risk assessment, risk communication, and prevention strategies in primary care settings, we developed a Web-based decision aid, RealRisks, that aims to improve preference-based decision-making for breast cancer prevention, particularly in low-numerate women.MethodsRealRisks incorporates experience-based dynamic interfaces to communicate risk aimed at reducing inaccurate risk perceptions, with modules on breast cancer risk, genetic testing, and chemoprevention that are tailored. To begin, participants learn about risk by interacting with two games of experience-based risk interfaces, demonstrating average 5-year and lifetime breast cancer risk. We conducted four focus groups in English-speaking women (age ≥18 years), a questionnaire completed before and after interacting with the decision aid, and a semistructured group discussion. We employed a mixed-methods approach to assess accuracy of perceived breast cancer risk and acceptability of RealRisks. The qualitative analysis of the semistructured discussions assessed understanding of risk, risk models, and risk appropriate prevention strategies.ResultsAmong 34 participants, mean age was 53.4 years, 62% (21/34) were Hispanic, and 41% (14/34) demonstrated low numeracy. According to the Gail breast cancer risk assessment tool (BCRAT), the mean 5-year and lifetime breast cancer risk were 1.11% (SD 0.77) and 7.46% (SD 2.87), respectively. After interacting with RealRisks, the difference in perceived and estimated breast cancer risk according to BCRAT improved for 5-year risk (P=.008). In the qualitative analysis, we identified potential barriers to adopting risk-appropriate breast cancer prevention strategies, including uncertainty about breast cancer risk and risk models, distrust toward the health care system, and perception that risk assessment to pre-screen women for eligibility for genetic testing may be viewed as rationing access to care.ConclusionsIn a multi-ethnic population, we demonstrated a significant improvement in accuracy of perceived breast cancer risk after exposure to RealRisks. However, we identified potential barriers that suggest that accurate risk perceptions will not suffice as the sole basis to support informed decision making and the acceptance of risk-appropriate prevention strategies. Findings will inform the iterative design of the RealRisks decision aid.

Ethics, Risk, and Media Intervention: Women's Breast Cancer in Venezuela.

Breast cancer incidence and mortality rates are of concern among Latin American women, mainly due to the growing prevalence of this disease and the lack of compliance to proper breast cancer screening and treatment. Focusing on Venezuelan women and the challenges and barriers that interact with their health communication, this paper looks into issues surrounding women's breast cancer, such as the challenges and barriers to breast cancer care, the relevant ethics and responsibilities, the right to health, breast cancer risk perception and risk communication, and the media interventions that affect Venezuelan women's perceptions and actions pertaining to this disease. In particular, it describes an action-oriented research project in Venezuela that was conducted over a four-year period of collaborative work among researchers, practitioners, NGOs, patients, journalists, and policymakers. The outcomes include positive indications on more effective interactions between physicians and patients, increasing satisfactions about issues of ethical treatment in providing healthcare services, more sufficient and responsible media coverage of breast cancer healthcare services and information, a widely supported declaration for a national response against breast cancer in Venezuela, and the creation of a code of ethics for the Venezuelan NGO that led the expansion of networking in support of women's breast cancer healthcare.

General Practitioners and Breast Surgeons in France, Germany, Netherlands and the UK show variable breast cancer risk communication profiles

BackgroundNo information is available on the attitudes of General Practitioners (GPs) and Breast Surgeons (BSs) to their delivery of genetic, environmental and lifestyle risk factor information about breast cancer. The aim of this study was to describe the Breast Cancer Risk Communication Behaviours (RCBs) reported by GPs and BSs in four European countries and to determine the relationships between their RCBs and their socio-occupational characteristics.MethodsSelf-administered questionnaires assessing breast cancer risk communication behaviours using vignettes were mailed to a sample of Breast Surgeons (BS) and General Practitioners (GP) working in France, Germany, the Netherlands, and the UK (N = 7292). Their responses to questions about the risk factors were first ordered and compared by specialty and country after making multivariate adjustments. Rather than defining a standard Risk Presentation Format (RPF) a priori, the various RPFs used by the respondents were analyzed using cluster analysis.ResultsFamily history and hormonal replacement therapy were the risk factors most frequently mentioned by the 2094 respondents included in this study. Lifestyle BC risk factors such as obesity and alcohol were rarely/occasionally mentioned, but this point differed (p < 0.001) depending on the country and the specialty of the providers involved. Five distinct RPF profiles including the numerical/verbal presentation of absolute/relative risks were identified. The most frequently encountered RPF (34.2%) was characterized by the fact that it included no negative framing of the risks, i.e., the probability of not developing cancer was not mentioned. Age, specialty and country of practice were all found to be significant determinants of the RPF clusters.ConclusionsThe increasing trend for GPs and BSs to discuss lifestyle risk factors with their patients suggests that this may be a relevant means of improving breast cancer prevention. Physicians’ risk communication skills should be improved during their initial and vocational training.

The effectiveness of a graphical presentation in addition to a frequency format in the context of familial breast cancer risk communication: a multicenter controlled trial

BackgroundInadequate understanding of risk among counselees is a common problem in familial cancer clinics. It has been suggested that graphical displays can help counselees understand cancer risks and subsequent decision-making. We evaluated the effects of a graphical presentation in addition to a frequency format on counselees’ understanding, psychological well-being, and preventive intentions.Design: Multicenter controlled trial.Setting: Three familial cancer clinics in the Netherlands.MethodsParticipants: Unaffected women with a breast cancer family history (first-time attendees).Intervention: Immediately after standard genetic counseling, an additional consultation by a trained risk counselor took place where women were presented with their lifetime breast cancer risk in frequency format (X out of 100) (n = 63) or frequency format plus graphical display (10 × 10 human icons) (n = 91).Main outcome measures: understanding of risk (risk accuracy, risk perception), psychological well-being, and intentions regarding cancer prevention. Measurements were assessed using questionnaires at baseline, 2-week and 6-month follow-up.ResultsBaseline participant characteristics did not differ between the two groups. In both groups there was an increase in women’s risk accuracy from baseline to follow-up. No significant differences were found between women who received the frequency format and those who received an additional graphical display in terms of understanding, psychological well-being and intentions regarding cancer prevention. The groups did not differ in their evaluation of the process of counseling.ConclusionWomen’s personal risk estimation accuracy was generally high at baseline and the results suggest that an additional graphical display does not lead to a significant benefit in terms of increasing understanding of risk, psychological well-being and preventive intentions.Trial registrationCurrent Controlled Trials http://ISRCTN14566836

Abstract P5-13-03: Breast cancer risk assessment for underserved minority women in primary care: patient and provider perspectives

Abstract Background: Individualized breast cancer risk assessment can identify women at increased risk who are candidates for interventions with proven benefit, including chemoprevention, enhanced surveillance, genetic testing and risk-reducing surgery. Systematic risk assessment and prescription of individualized, risk-adapted cancer control recommendations provides a novel method for addressing cancer disparities in underserved minority women. Widespread dissemination of these approaches requires implementation in the primary care setting. Purpose: to determine potential benefits and harms of a policy for routinely providing personalized breast cancer risk assessment for underserved minority women from the perspectives of patients and primary care providers (PCPs), and to explore ethical implications of breast cancer risk communication in this patient population. Methods: African American and Hispanic women age 25–69 years without a history of breast cancer, presenting for a routine scheduled appointment with their primary provider at a Federally Qualified Health Center were invited to participate in a study on women's views about breast cancer risk. Breast cancer risk factor data was collected from all participants and individualized risk assessments were performed using three models (NCI BCRAT, Claus model and a pedigree assessment tool). PCPs discussed the results of the assessment with their patients and provided computer-generated, risk-adapted recommendations for screening and prevention that are based on national guidelines. Using a mixed methods approach, we collected quantitative survey data from participants at baseline (prior to receipt of risk information), immediately following the encounter with their PCP and two weeks later. We also used qualitative approaches in a subgroup of participants from each of three risk strata (general population risk, moderately-increased and high risk) including audio-recorded observational data from physician-patient interactions and in-depth interviews with patients and physicians in order to evaluate how women process risk information and make decisions regarding how to act on that information. Data collected broadly focused on the following topics: Interpretation and initial reaction to the personalized risk information provided by the PCPWhat it means to be “at (baseline, moderate, high) risk”Views on value of/potential benefits and harms of personalized risk informationLevel of trust in the informationPreferences regarding recommended surveillance strategies and risk reduction strategies (for moderate and high risk groups)Preferences regarding shared decision makingFuture plans/action steps based on personalized risk informationPerceptions of the manner that personalized risk information was presented to them by their PCP Results: We are planning to enroll 480 participants for the quantitative survey portion and 48 participants for in-depth qualitative data collection, including audio-recorded patient-physician interactions and in-depth patient interviews, along with 8 in-depth provider interviews. Data collection is ongoing and results will be presented. Acknowledgement: This research was supported by a grant from the National Cancer Institute (2P50CA106743) Citation Information: Cancer Res 2012;72(24 Suppl):Abstract nr P5-13-03.

A focus group study on breast cancer risk presentation: one format does not fit all

Identifying a strategy that would optimize both the communication and understanding of the individual breast cancer risk remains a considerable challenge. This study explored the preferences of women with a family history of breast cancer about six presentation formats of individual breast cancer risk, as calculated from a risk prediction model. Thirty-four unaffected women attending genetic counseling because of a family history of breast cancer participated in six focus groups conducted in Québec City (2), Montréal (2) and Toronto (2), Canada. Six risk formats were presented for a fictitious case involving a 35-year-old woman (1-numerical: cumulative risk probabilities by age until 80 years; 2-risk curves: probabilities expressed in a risk curve that also provided a risk curve for a woman with no family history in first-degree relatives; 3-relative risk of breast cancer by age 80 years; 4 and 5-absolute risk of breast cancer and absolute chance of not developing breast cancer in the next 20 years; 6-qualitative: color-coded figure). Participants were asked to indicate their appreciation of each format. A group discussion followed during which participants commented on each format. The most and least appreciated formats were risk curves and relative risk, respectively. Overall, participants advocated the use of formats that combine quantitative, qualitative and visual features. Using a combination of approaches to communicate individual breast cancer risks could be associated with higher satisfaction of counselees. Given the increasing use of risk prediction models, it may be relevant to consider the preferences of both the counselee and the professional.

To know or not to know? Not the only question in familial breast cancer risk communication.

BackgroundBreast cancer is the most frequently diagnosed cancer and the leading cause of cancer death in females, 5–10% of these breast cancers occur in women because of an inherited mutation. The term ‘risk’ in relation to familial cancer can have multiple meanings for both clinicians and patients. Failing to identify and address this may impair effective communication and informed decision making and adversely affect the quality of patient care.The aim of this research for the Eurocancercoms project was to explore patients' experience of risk communication in breast cancer and to investigate a mechanism for sharing these experiences using a filmed round-table discussion (RTD).MethodsA filmed RTD with six women who had experience of, or some connection with familial breast cancer was conducted. Criteria for inclusion included a willingness and ability to participate in the discussion in English and to be prepared for the discussion to be hosted online with opportunities for others to view and comment.ResultsThe main findings are presented as key themes and issues arising from the RTD. There was consistency in the group on the need for improvements to the risk communication process as a whole and in particular around onward diffusion of information i.e. ‘Telling the family’. There were differences regarding ‘wanting to know’ their genetic status.ConclusionsThe perception of cancer risk in the narratives stems not only from the way risks are stated, but from family history, personal experiences, cultural norms and beliefs and therefore a multifaceted approach to risk communication addressing these issues is necessary to ensure the patient fully understands the potential risks. There is a balance when attending to patient's information needs, as to what level and amount of information is required by the individual at a particular time and communicators need to be able to tailor information accordingly.

Breast cancer risk assessment in a mammography screening program and participation in the IBIS-II chemoprevention trial

It has been shown in several studies that antihormonal compounds can offer effective prophylactic treatment to prevent breast cancer. In view of the low participation rates in chemoprevention trials, the purpose of this study was to identify the characteristics of women taking part in a population-based mammography screening program who wished to obtain information about the risk of breast cancer and then participate in the the International Breast Cancer Intervention Study II (IBIS-II) trial, a randomized double-blind controlled chemoprevention trial comparing anastrozole with placebo. A paper-based survey was conducted in a population-based mammography screening program in Germany between 2007 and 2009. All women who met the criteria for the mammography screening program were invited to complete a questionnaire. A total of 2,524 women completed the questionnaire, and 17.7% (n = 446) met the eligibility criteria for the IBIS-II trial after risk assessment. The women who wished to receive further information about chemoprevention were significantly younger (P < 0.01) and had significantly more children (P = 0.03) and significantly more relatives with breast cancer (P < 0.001). There were no significant differences between the participants with regard to body mass index or hormone replacement therapy. Normal mammographic findings at screening were the main reason (42%) for declining to participate in the IBIS-II trial or attend risk counseling. The ultimate rate of recruitment to the IBIS-II trial was very low (three women). Offering chemoprevention to women within a mammography screening unit as part of a paper-based survey resulted in low participation rates for both, the survey and the final participation in the IBIS-II trial. More individualized approaches and communication of breast cancer risk at the time of the risk assessment might be helpful to increase the participation and the understanding of chemopreventive approaches.

Breast cancer risk communication: Assessment of primary care physicians by standardized patients

PurposeTo assess primary care providers' communication about breast cancer risk. MethodsWe evaluated 86 primary care providers' communication of risk using unannounced standardized (simulated) patients. Physicians were randomly assigned to receive one of three cases: (1) moderate risk case (n = 25), presenting with a breast lump and mother with postmenopausal breast cancer; (2) high-risk (maternal side) case (n = 28), presenting with concern about breast cancer risk; and (3) high-risk (paternal side) case (n = 33), presenting with an unrelated problem. After the appointment, three qualitative parameters were assessed by standardized patients on a 3-point scale (3 = highest satisfaction, 1 = lowest): whether the physician took adequate time; acknowledged her concerns; and offered reassurance. ResultsMean satisfaction with physician communication was higher for the moderate risk case (2.92) than for the high-risk paternal case (2.25) or high-risk maternal case (2.42) (P < 0.0001). The score was not influenced by session length, medical specialty, or physician gender. ConclusionPhysicians more consistently provided a moderate risk standardized patients with reassurance and support compared with the high-risk cases. Primary care physicians may be more unprepared or uneasy addressing the issues raised by more complex scenarios and may benefit from training in the assessment and communication of breast cancer risk.