Development of a Personalized Decision Aid for Breast Cancer Risk Reduction and Management

Background: Breast cancer risk reduction has the potential to decrease the incidence of the disease, yet remains underused. We report on the development a web-based tool that provides automated risk assessment and personalized decision support designed for collaborative use between patients and clinicians. Methods: Under Institutional Review Board approval, we evaluated the decision tool through a patient focus group, usability testing, and provider interviews (including breast specialists, primary care physicians, genetic counselors). This included demonstrations and data collection at two scientific conferences (2009 International Shared Decision Making Conference, 2009 San Antonio Breast Cancer Symposium). Results: Overall, the evaluations were favorable. The patient focus group evaluations and usability testing (N = 34) provided qualitative feedback about format and design; 88% of these participants found the tool useful and 94% found it easy to use. 91% of the providers (N = 23) indicated that they would use the tool in their clinical setting. Conclusion: BreastHealthDecisions.org represents a new approach to breast cancer prevention care and a framework for high quality preventive healthcare. The ability to integrate risk assessment and decision support in real time will allow for informed, value-driven, and patient-centered breast cancer prevention decisions. The tool is being further evaluated in the clinical setting

Chemoprevention for Primary Breast Cancer Risk Reduction for Women at High Risk of Breast Cancer: Implementing an Evidence-Based Recommendation

This capstone project was an evidence-based quality improvement project with three objectives: (a) to understand current practice of primary breast cancer chemoprevention in an integrated health system; (b) to evaluate the most current evidence available and the U.S. Preventive Services Task Force’s (2013) Breast Cancer: Medications for Risk Reduction recommendation; and (c) to plan for implementation of the recommendation as a clinical practice guideline and evaluate the guideline outcomes through a future pilot study. The pilot study was not part of the capstone but included for planning purposes. Evidence exists of the effectiveness of selective estrogen receptor modulators and aromatase inhibitors for risk reduction of primary breast cancer for women at high risk for the development of breast cancer. Recommendations have been published by national prevention and oncology organizations advocating use of these pharmacologic agents in the high-risk female population. Despite good evidence, the use of medications to prevent breast cancer among women at high risk has not been put into practice. Local data support that women at high risk of breast cancer have not been educated about nor offered medications to reduce their risk. A Delphi method was used to understand obstacles to recommendation of chemoprevention and strategies to facilitate discussions with high-risk women. The development and implementation of a clinical practice guideline for breast cancer risk reduction would increase use of current evidence consistent with national standards of care, inform women of options for breast cancer risk reduction, and engage healthcare providers in shared decision-making with women relevant to breast cancer risks

Understanding social, cultural, and religious factors influencing medical decision-making on breast cancer genetic testing in the Orthodox Jewish community

Background. While the prevalence of a pathogenic variant in the BRCA1 and BRCA2 genes occurs in about 1:400 (0.25%) in the general population, the prevalence is as high as 1:40 (2.5%) among the Ashkenazi Jewish population. Despite cost-effective preventive measures for mutation carriers, Orthodox Jews constitute a cultural and religious group that presents challenges to BRCA1 and BRCA2 genetic testing. This study analyzed a dialogue of key stakeholders and community members to explore factors that influence decision-making about BRCA1 and BRCA2 genetic testing in the New York Orthodox Jewish community. Methods. Qualitative research methods, based in Grounded Theory and Narrative Research, were utilized to analyze the narratives of key stakeholders and community members in an analysis of qualitative data collected from 49 stakeholders. A content analysis was conducted to identify themes; inter-rater reliability was 71%. Results. Facilitators to genetic testing were prevention and education, while barriers to genetic testing included negative emotions, impact on family/romantic relationships, cost, and stigma. The role of religious figures and healthcare professionals in medical decision-making were viewed as controversial. Education, health, and community were discussed as influential factors. There were issues around disclosure, implementation, and information needs. Conclusion. This study revealed the voices of the Orthodox Jewish women (decision-makers) and key stakeholders (influencers) who play a critical role in the medical decision-making process. The findings have broad implications for engaging community stakeholders within faith-based or culturally distinct groups to ensure better utilization of healthcare services for cancer screening and prevention designed to improve population health

Medically-defined risk and the engagement of patients in health services: a multi-level perspective

Identifying and communicating a disease diagnosis has historically been the center of the medical encounter. Recent advances in molecular biology and genetics have increased the amount of care devoted to disease screening and risk assessment. In this era of prevention, risk itself has become a ‘problem’ requiring intervention where once such problems were left unidentified. Treating risk as a diagnosis itself allows it be treated in a familiar manner, but marginalizes the patient experience. It is important to understand how adopting a biomedical view of risk and prevention influences participation in care and patient willingness to engage with the medical system, despite a lack of manifest disease. This is a critical gap in knowledge at a time when there is increased emphasis on preventive medicine. This dissertation contains three chapters that seek to characterize how identifying, labeling, and developing interventions for patients 'at risk' affects service provision and use. Study 1, Explanatory Models of Risk: The Role of Social Context in Breast Cancer Risk Perception and Decision-Making, sought to characterize explanatory models of risk among women at risk for developing breast cancer. Qualitative interviews demonstrated the importance of perceptions of risk and control in combination with elements of explanatory models and social context in their decision-making. Study 2, Associations between Breast Cancer Risk and General Health Service Use, considered the possibility that patterns of health service utilization may change following a medical finding that is often perceived as increased risk. Results showed a greater increase in the rate of outpatient visits and referrals in the year following a false positive mammogram, suggesting such utilization is driven by both patients and providers. Study 3, An Assessment of Patient Navigator Activities in Breast Cancer Patient Navigation Programs Using a Nine-Principle Framework, described similarities and differences in the execution of patient navigation programs designed to increase engagement in care among individuals who have been labeled as ‘at risk’ upon having an abnormal mammogram. Activities conducted by navigators where shown to vary according to the local context and population of women that they served

J Adolesc Health

Given the continued growth in the number of persons with cancer in the United States, the primary prevention of cancer remains an urgent public health priority. As the field of cancer prevention continues to mature and scientific knowledge evolves, it is imperative to challenge the status quo and embrace new approaches to cancer prevention. In this commentary, we summarize recent trends and some of the scientific advances that have been made over the past few decades regarding the complex process of cancer development and the interaction of individual and social risk factors. We examine some of the assumptions and terminology that have characterized cancer prevention approaches for more than a quarter century and the impact of these assumptions and our use of terminology. We propose that it is possible for today's youth to experience lower cancer incidence rates as adults compared with previous generations. To accomplish this goal, a more transdisciplinary and multifaceted approach is needed, adapted as appropriate for different populations and stages of life. The greatest improvements in cancer prevention may occur as a result of innovative, multilevel interventions that build on the expanding scientific evidence base.CC999999/Intramural CDC HHS/United States2015-04-20T00:00:00Z23601606PMC440297

Doctor of Philosophy

dissertationThe purpose of this research was to describe calculated risk, risk perceptions of future breast cancer, and accuracy of risk perceptions of relatives (sisters or daughters) of women who have breast cancer and received genetic counseling regarding indeterminate negative BRCA1/2 test results. A secondary purpose was to evaluate breast cancer screening recommendations from relative's primary care providers (PCPs) and recent screening participation. We assessed the type and amount of information about genetic counseling/testing that was shared among family members and with PCPs. Latent variable modeling was used to assess the influence of perceived amount of shared information on the accuracy of relative's own risk perceptions about breast cancer. Using a cross-sectional design, surveys and telephone interviews were conducted with 85 female relatives. Most estimated their risk to be higher than calculated estimates, yet calculated risk demonstrated that most were at average-risk (operationalized as 20% lifetime risk by Claus or BRCAPRO), warranting annual breast magnetic resonance imaging (MRI) screening according to national guidelines; none of these women received recommendations for MRI screening. Regarding sharing of information, nearly 20% of relatives reported that nothing was iv shared with them about their family member's genetic counseling; most (76.5%) did not discuss their family member's genetic testing or test results with their PCP. Further, relatives were generally unaware of the existence of a genetic counseling summary letter provided as part of standardized genetic counseling. Those who perceived more information was shared with them about their relative's genetic counseling had more accurate perceptions of their own risk for breast cancer (correlation = 0.748 (p=0.000) than women who perceived less information was shared (correlation = 0.346 (p=0.05). Our findings underscore the need for effective strategies that facilitate sharing of genetic counseling information with relatives and PCPs

Adherence to Recommended Risk Management among Unaffected Women with a BRCA Mutation

Identifying unaffected women with a BRCA mutation can have a significant individual and population health impact on morbidity and mortality if these women adhere to guidelines for managing cancer risk. But, little is known about whether such women are adherent to current guidelines. We conducted telephone surveys of 97 unaffected BRCA mutation carriers who had genetic counseling at least one year prior to the survey to assess adherence to current guidelines, factors associated with adherence, and common reasons for performing and not performing recommended risk management. More than half of participants reported being adherent with current risk management recommendations for breast cancer (69%, n=67), ovarian cancer (82%, n=74) and both cancers (66%, n=64). Older age (OR=10.53, p=0.001), white race (OR=8.93, p=0.019), higher breast cancer genetics knowledge (OR=1.67, p=0.030), higher cancer-specific distress (OR=1.07, p=0.002) and higher physical functioning (OR=1.09, p=0.009) were significantly associated with adherence to recommended risk management for both cancers. Responses to open-ended questions about reasons for performing and not performing risk management behaviors indicated that participants recognized the clinical utility of these behaviors. Younger individuals and those with lower physical functioning may require targeted interventions to improve adherence, perhaps in the setting of long-term follow-up at a multi-disciplinary hereditary cancer clinic

An Association of Cancer Physicians' strategy for improving services and outcomes for cancer patients.

The Association of Cancer Physicians in the United Kingdom has developed a strategy to improve outcomes for cancer patients and identified the goals and commitments of the Association and its members.The ACP is very grateful to all of its members who have expressed views on the development of the strategy and to the sponsors of our workshops and publications, especially Cancer Research UK and Macmillan Cancer SupportThis is the final version of the article. It was first available from Cancer Intelligence via http://dx.doi.org/10.3332/ecancer.2016.60