Rebecca Howe

Impact of Ductal Carcinoma In Situ Terminology on Patient Treatment Preferences

Impact of Ductal Carcinoma In Situ Terminology on Patient Treatment Preferences Ductal carcinoma in situ (DCIS) is a preinvasive malignancy of the breast and is diagnosed in more than 50 000 women a year in the United States. It is treated with either mastectomy or lumpectomy, often combined with radiation therapy.1 In cases of low-grade DCIS, studies suggest that if progression occurs, it does so within a time frame of 5 to 40 years2 and possibly in only 20% of DCIS cases.3 This raises the possibility that some cases of DCIS will follow an indolent course that will not attain clinical significance during the patient’s lifetime. Accordingly, watchful waiting has been proposed as a reasonable option for DCIS,4 akin to what is currently offered for patients with early stage prostate cancer; however, how to implement such a strategy is unclear. Many women are unable to distinguish between preinvasive and invasive cancer and often overestimate the implications of a DCIS diagnosis.5 These misperceptions may drive patients’ willingness for invasive treatments. Health care providers’ communication with their patients about DCIS plays an important role in patients understanding the risks of their diagnosis. Terms such as carcinoma, stage-0 cancer, and noninvasive cancer are commonly used to describe DCIS and may further contribute to the confusion engendered in many patients.6 Given the inconsistent terminology used for DCIS, we hypothesized that when DCIS is described without the term cancer, women would be more likely to opt for noninvasive approaches such as medication or watchful waiting in place of surgery.

Development of a personalized decision aid for breast cancer risk reduction and management

BackgroundBreast 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.MethodsUnder 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).ResultsOverall, 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.ConclusionBreastHealthDecisions.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.

Abstract P4-11-03: Single nucleotide polymorphism testing for breast cancer risk assessment: patient trust and willingness to pay

Background: The field of breast cancer risk assessment is advancing rapidly with recent discoveries about risk conferring single nucleotide polymorphisms (SNPs). While these discoveries can promote personalized medicine, they are often brought to the market with direct to consumer (DTC) testing before data can support their widespread use and before reliable options for dealing with testing outcomes can be offered. In this context, and knowing that patients often misunderstand risk information, it is unclear how patients will respond to these options. Methods: We surveyed high risk women9s interest in SNP testing. Participants were recruited from the Cancer Genetics Network (CGN), a national network of cancer centers that maintains a database of individuals with a family history of cancer. Participants were asked to answer questions regarding their interest in SNP testing including: whether they trust it, how much they would be willing to pay for testing, how they prefer to be tested, and how they would proceed with information identifying them as below or above average risk. Results: 189 women without a history of breast cancer or SNP testing completed the questionnaire. The average age of the participants was 49, ranging from 30 to 65. All participants had at least one relative with breast or ovarian cancer. 13% had previously tested positive for a BRCA mutation, and 33% had received BRCA testing. Most women (90%) did not know what SNP testing was prior to the survey. Once SNP testing was described, 68% of women were interested in DTC SNP testing; at the same time, only 38% of the participants reported that they trusted DTC SNP testing. Conclusion: While our results show that women are interested in DTC SNP testing, their willingness to pay is lower than the DTC cost (∼

Cost-Effectiveness Analysis of Intraoperative Radiation Therapy for Early-Stage Breast Cancer

300). Involvement of genetic counselors and providers in SNP testing discussions may be needed to overcome the current lack of trust of DTC testing among patients. Many women showed interest in lifestyle interventions, suggesting that these interventions should be incorporated as part of standard follow-up recommendations. When identified by SNP testing as “below average” risk, women do not seem to trust the results enough to forego regular mammograms. As DTC testing becomes more common, and as more SNP tests become available, it will be necessary for the medical community to address patients9 interest in these tests and to assist in interpreting results. Citation Information: Cancer Res 2012;72(24 Suppl):Abstract nr P4-11-03.