Knowledge, satisfaction, and perceived cancer risk among women diagnosed with ductal carcinoma in situ.

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.

Patient Motivation, Satisfaction, and Coping in Genetic Counseling and Testing for BRCA1 and BRCA2.

Women with a strong family history of breast and/or ovarian cancer can now have genetic testing, that may identify mutations associated with increased cancer predisposition. Within the context of a clinical trial evaluating printed educational materials, we examined motivation, satisfaction, coping, and perceptions of genetic counseling and testing among 159 women who underwent pretest counseling and made a testing decision. Ninety-six percent of the participants elected to have BRCA1/2 testing. When making a decision about genetic testing, study participants were concerned less about the potential negative effects that could result from testing than the potential benefits. After counseling, participants said that they felt better able to make decisions that were right for them and that their questions and concerns were adequately addressed during the session. Ninety-five percent of the women were satisfied with their test decision. Participants used a range of strategies to cope with thoughts and feelings about cancer and/or genetic testing immediately following test decision. Results suggest that the genetic counseling session helped women make decisions about testing for BRCA1 and BRCA2, even in the setting of a trial in which all women also received detailed educational materials. Further, the results indicate that future research focusing on perceptions of risks and benefits of testing and of coping strategies immediately following test decision may be warranted.

Ethical ramifications of alternative means of recruiting research participants from cancer registries.

BACKGROUND: The protection of confidentiality and the extent to which voluntary and meaningful informed consent can be obtained from potential participants are critical when recruiting patients for clinical research from cancer registries. In the current study the authors describe the influence of two methods of recruitment from a cancer registry (direct contact by research staff and contact by research staff after physicians alert potential participants) on these issues. METHODS: Enrollment rates were tabulated using each recruitment method and complaints received from potential participants regarding recruitment were reviewed. RESULTS: Of 416 women approached to participate, the first 351 women were recruited by way of direct contact by research staff and the remaining 65 women were recruited by research staff after their physician had sent them an alert letter. There was no difference in the enrollment rate using the two methods. One potential participant believed that her confidentiality had been violated and another hung up the telephone when contacted directly; two potential subjects reported feeling pressure to participate because their physician sent them a letter. CONCLUSIONS: Although concerns regarding violating confidentiality clearly are justified when recruiting research participants from cancer registries, patients also may feel pressure to participate if physician notification is part of the process. It is incumbent on investigators and institutional review boards charged with overseeing this research that they respect confidentiality and avoid pressuring persons to participate in research. It also is critical that persons whose medical information will be entered into cancer registries be informed about this process as well as how the registry will be used for research.

Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2.

PURPOSE: This study examined baseline knowledge, beliefs, and risk perceptions among a group of 200 women with breast and/or ovarian cancer who participated in a trial designed to improve decision making about genetic testing for BRCA1 and BRCA2. PATIENTS AND METHODS: Women were identified by self-referral, physician referral, and tumor registry extraction and invited to participate in a randomized trial in which testing for BRCA1 and BRCA2 was offered free of charge. Subjects completed baseline questionnaires and interviews that assessed knowledge, attitudes, and perceptions of risk of having an alteration in BRCA1 or BRCA2. RESULTS: Sixty percent of women overestimated their chances of having a BRCA1 or BRCA2 mutation compared with estimates from a BRCA1/BRCA2 risk model. Women who have at least three relatives with breast or ovarian cancer were one third (95% confidence interval, 0.2 to 0.6) as likely to overestimate their risk of having a BRCA1 or BRCA2 mutation compared with women who have two or fewer affected relatives. Knowledge was limited about BRCA1 and BRCA2 mutations and cancer risk associated with gene mutations. Eighty-four percent of the women indicated a probable or definite interest in testing. CONCLUSION: 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.

Preoperative smoking habits and postoperative pulmonary complications.

OBJECTIVE: To examine the effect of preoperative smoking behavior on postoperative pulmonary complications. DESIGN: Prospective cohort study. SETTING: The Veterans Administration Medical Center, Syracuse, NY. PARTICIPANTS: Patients scheduled for noncardiac elective surgery (n=410). MEASUREMENTS AND RESULTS: Smoking status was determined by self-report. Postoperative pulmonary complications were determined by systematic extraction of medical record data. Postoperative pulmonary complications occurred in 31 of 141 (22.0%) current smokers, 24 of 187 (12.8%) past smokers, and 4 of 82 (4.9%) never smokers. The odds ratio (OR) for developing a postoperative pulmonary complication for current smokers vs never smokers was 5.5 (95% confidence interval [CI], 1.9 to 16.2) and 4.2 (95% CI, 1.2 to 14.8) after adjustment for type of surgery, type of anesthesia, abnormal chest radiograph, chronic cough, history of pulmonary disease, history of cardiac disease, history of COPD, education level, pulmonary function, body mass index, and age. Current smokers who reported reducing cigarette consumption prior to surgery were more likely to develop a complication compared with those who did not (adjusted OR=6.7, 95% CI, 2.6 to 17.1). CONCLUSIONS: Current smoking was associated with a nearly sixfold increase in risk for a postoperative pulmonary complication. Reduction in smoking within 1 month of surgery was not associated with a decreased risk of postoperative pulmonary complications.

Informed consent for BRCA1 and BRCA2 testing.

While the cloning of BRCA1 and BRCA2 in 1994 and 1995 engendered great enthusiasm from cancer patients, their families and physicians, concerns about potential problems faced by those undergoing genetic testing were also evident. Although much can be learned from previous research on informed consent for testing and research for predictive genetic testing in diseases other than cancer, there are some specific issues related to cancer that make the questions more pressing, more difficult, and of larger social concern. Organizations such as the National Advisory Council for Human Genome Research, the American Society for Human Genetics, the American Society of Clinical Oncology and the Task Force for Genetic Testing have presented recommendations about informed consent for cancer susceptibility testing. However, many unanswered questions remain concerning the informed consent process. This review provides background on informed consent, summarizes studies that have been conducted in the area of genetic testing, with a focus on testing for BRCA1 and BRCA2, and details recommendations for achieving informed consent for genetic testing for cancer susceptibility and research on cancer genetics.

The psychosocial consequences of mammography.

Increasing numbers of mammograms being performed in the United States will be accompanied inevitably by an increasing number of false positives. According to reliable estimates from a survey of radiology facilities, U.S. women in their forties experience close to one million false positive mammograms every year. To determine the impact of false positive mammograms and the broader psychological impact of mammography, we conducted literature searches of Medline, CancerLit, and PsycInfo. We identified nine studies examining the impact of false positive mammograms. Most found short-term increases in such psychological measures as anxiety, distress, and intrusive thoughts. One study found substantial effects on these measures three months after an abnormal mammogram. Another study found an 18-month impact on anxiety. Few studies have used behavioral outcomes, but one reported overpractice of breast self-exam among women who had received false positive results. Another found no reduction in adherence to mammography among women who have had an abnormal test. The more general mammography literature suggests that many women are anxious about mammography before the exam; women with lower levels of education, African Americans, and women with a family history of breast cancer may be more vulnerable to distress. Unfortunately, this literature suffers major limitations, such as small sample sizes, inconsistent and sometimes inappropriate measures, variations in the time frames for measurement, few studies with women aged 40-49, and a paucity of U.S. research. More research is needed to characterize at-risk women and to test interventions designed to reduce the negative impact of abnormal mammograms. Improved communication is also needed throughout the entire mammography process.