No abstract

A limited number of studies have examined the involvement of spouses in the decision-making process for genetic testing as well as impact of the actual testing. This report presents data from 40 women with a personal history of breast and/or ovarian cancer who were considering genetic testing for BRCA1 and BRCA2 and their spouses. We examined knowledge and attitudes regarding genetic testing for breast cancer susceptibility, perceptions of the likelihood that their wives (the women) had a BRCA1 or BRCA2 mutation, pros and cons of genetic testing, spouses' satisfaction with their involvement in the decision-making process and additional resources they would find helpful. Knowledge about cancer genetics and genetic testing for BRCA1 and BCA2 was limited among both women and their spouses. Up to one-third of spouses indicated that they would like to avail themselves of additional sources of information about BRCA1 and BRCA2 testing. Most spouses indicated that they thought their wives had a mutation in BRCA1 or BRCA2 and that their wives' breast cancers would recur. Pros of genetic testing were emphasized more than cons among both parties. Overall, spouses were satisfied with their role in the decision-making process. Future interventions to improve the decision-making process regarding genetic testing for breast cancer susceptibility should be undertaken.

The prevalence of ductal carcinoma in situ (DCIS) has increased through more widespread use of screening mammography. Little is known about what women with DCIS understand about their disease and future health. Although there is a wealth of information about the psychological characteristics of women with invasive breast cancer, there is virtually no information about women who have received treatment for DCIS. Seventy-six women diagnosed with DCIS who were identified through the Duke University Tumor Registry completed a mailed self-administered questionnaire including a broad range of items to measure knowledge, satisfaction with care, risk perceptions, and psychological distress. Women with DCIS have knowledge deficits about DCIS and breast cancer, as well as concerns about recurrence and misperceptions about the likelihood for DCIS metastasis. Women were generally satisfied with their care. They were less satisfied with information related to prognosis and with perceived support from their doctors. The results of this study suggest several areas of concern for women diagnosed with DCIS. Data about risk perceptions, knowledge, and attitudes in women diagnosed with DCIS provide important preliminary ideas for future studies. In view of the frequency of the DCIS diagnosis, future investigation should be conducted to build on these findings.

A high proportion of the high-risk women in this study had knowledge deficits about BRCA1 and BRCA2 and overestimated their risk of having a mutation. Although some degree of caution should be used in generalizing the results of this study to practice settings, the data provide insight into the challenges clinicians will face in communicating with patients about cancer genetics.