Marc D. Schwartz

Psychological distress in women seeking genetic counseling for breast-ovarian cancer risk: The contributions of personality and appraisal

The purpose of the present study was two-fold: (a) to characterize the psychological status of women with a family history of breast or ovarian cancer who self-refer for genetic counseling and BRCA1 testing; and (b) to identify specific demographic, personality, and appraisal factors that contribute to cancer-specific distress and general distress in this group of women. Participants were 256 women ages 18 and older who had at least one first-degree relative (FDR) with breast and/or ovarian cancer. Participants were recruited through breast cancer clinics and obstetrics/gynecology departments at two medical centers by responding to program information described in a brochure. The results revealed moderate distress levels in this population. The results of a hierarchical regression of general distress indicated that women with higher levels of general distress were less likely to be married, less optimistic, and had heightened breast cancer risk perceptions accompanied by feelings of low perceptions of control over the development of breast cancer (R2=.44, p=.0001). Women with higher levels of cancer-specific distress tended to be younger and non-White and had low perceptions of control over developing breast cancer (R2=.15, p=.0002). These findings suggest that self-referred genetic counseling participants may be psychologically vulnerable and may benefit from interventions designed to decrease distress and the perceived absence of control over developing breast cancer.

Development and Evaluation of a Culturally Tailored Educational Video: Changing Breast Cancer–Related Behaviors in Chinese Women

This study developed and evaluated a culturally tailored video guided by the health belief model to improve Chinese womens low rate of mammography use. Focus-group discussions and an advisory board meeting guided the video development. A 17-min video, including a soap opera and physician-recommendation segment, was made in Chinese languages. A pretest/posttest pilot was conducted to evaluate the efficacy of the video in changing knowledge, beliefs, and screening intentions among Chinese women (age ≥ 40) who were nonadherent to current National Cancer Institutes mammography guidelines (n = 52). The results showed that the video significantly increased these womens screening intentions, knowledge, perceived risk for breast cancer, and perceived benefits of mammography. Chinese immigrant women were less likely to hold an Eastern view of health care and report barriers to screening after viewing the video. This video might have the potential to increase adherence to mammography screening in Chinese women.

Distress, personality, and mammography utilization among women with a family history of breast cancer.

The authors examined the impact of psychological distress and the personality construct of conscientiousness (as measured by the Neuroticism, Extraversion, and Openness-Five Factor Inventory) on mammography utilization among women who were at increased risk for breast cancer. Participants were 200 women who had at least 1 first degree relative with breast cancer. Overall, 80% of the participants had obtained a mammogram in the previous year. Analyses controlling for potential confounders (perceived risk, decisional balance, and physician recommendation for mammography), revealed that distress was negatively associated with mammography utilization among participants who were low in conscientiousness. Distress was not significantly related to mammography utilization among highly conscientious women. The results are discussed in terms of their implications regarding interventions designed to increase mammography utilization in this population.

Decision making and decision support for hereditary breast-ovarian cancer susceptibility.

Genetic testing for disease susceptibility has the potential to revolutionize health care by allowing for individually tailored disease prevention strategies. To achieve this promise, patients and physicians must use the information obtained through genetic testing to make medical decisions that are consistent with patient preferences and that lead to reduced disease morbidity and mortality. However, decisions associated with genetic testing can be complex. In this article, the authors review decision making associated with genetic testing and the medical management of hereditary breast-ovarian cancer susceptibility. They focus on decisions regarding BRCA1/2 testing and prophylactic surgery among BRCA1 and BRCA2 mutation carriers. They highlight the role of patient preferences and decision support in this population. The studies reviewed indicate that although patients preferences do predict genetic testing and management decisions, other factors also influence their decision making. In particular, the authors discuss the role of anxiety and worry in relation to testing and surgery decisions.

Knowledge, cultural, and attitudinal barriers to mammography screening among nonadherent immigrant Chinese women: ever versus never screened status.

Chinese‐American women have much lower mammography screening rates than the general population. This study examined the collective impact of knowledge, cultural views, and health beliefs on intentions to obtain mammography among Chinese women who had not had a mammogram in the previous year.

Consent to the Use of Stored DNA for Genetics Research: A Survey of Attitudes in the Jewish Population

The use of anonymized stored tissue is a routine practice in genetic research. Investigators who utilize stored samples are neither required nor able to obtain informed consent before each use. Many genetic studies, however, are conducted on specific ethnic populations (e.g., Ashkenazi Jews). The results in these cases, although individually anonymous, are not anonymous with respect to the ethnicity of the participants. This lack of group anonymity has led to concern about the possibility of stigmatization and discrimination based on the results of the genetic research. In the present study we surveyed Jewish individuals about their attitudes regarding the practice of using stored DNA samples for genetic research. Specifically, we were interested in whether attitudes about informed consent and willingness to participate in genetics research using stored DNA would depend on the circumstances in which the material was collected (i.e., clinical setting vs. research setting) and the characteristics of the disease or trait under investigation. Overall, most respondents reported that written informed consent should be required and that they would be willing to provide such consent. Participants were most willing to provide consent, however, when the sample had been collected in a research rather than clinical setting. Further, participants were more likely to endorse the need for obtaining consent when the sample was collected in a clinical setting. Finally, participants were significantly less willing to participate in research that examined stereotypical or potentially stigmatizing traits as opposed to research that examined medical or mental illnesses.

The development of a web- and a print-based decision aid for prostate cancer screening

BackgroundWhether early detection and treatment of prostate cancer (PCa) will reduce disease-related mortality remains uncertain. As a result, tools are needed to facilitate informed decision making. While there have been several decision aids (DAs) developed and tested, very few have included an exercise to help men clarify their values and preferences about PCa screening. Further, only one DA has utilized an interactive web-based format, which allows for an expansion and customization of the material. We describe the development of two DAs, a booklet and an interactive website, each with a values clarification component and designed for use in diverse settings.MethodsWe conducted two feasibility studies to assess mens (45-70 years) Internet access and their willingness to use a web- vs. a print-based tool. The booklet was adapted from two previous versions evaluated in randomized controlled trials (RCTs) and the website was created to closely match the content of the revised booklet. Usability testing was conducted to obtain feedback regarding draft versions of the materials. The tools were also reviewed by a plain language expert and the interdisciplinary research team. Feedback on the content and presentation led to iterative modifications of the tools.ResultsThe feasibility studies confirmed that the Internet was a viable medium, as the majority of men used a computer, had access to the Internet, and Internet use increased over time. Feedback from the usability testing on the length, presentation, and content of the materials was incorporated into the final versions of the booklet and website. Both the feasibility studies and the usability testing highlighted the need to address mens informed decision making regarding screening.ConclusionsInformed decision making for PCa screening is crucial at present and may be important for some time, particularly if a definitive recommendation either for or against screening does not emerge from ongoing prostate cancer screening trials. We have detailed our efforts at developing print- and web-based DAs to assist men in determining how to best meet their PCa screening preferences. Following completion of our ongoing RCT designed to test these materials, our goal will be to develop a dissemination project for the more effective tool.Trial RegistrationNCT00623090

Prostate cancer screening and shared decision-making preferences among African-American members of the Prince Hall Masons

Objectives: Shared decision making (SDM) is recommended as one method to assist men in making an informed decision about prostate cancer screening (PCS). SDM preferences for PCS have not been evaluated among African‐American (AA) men. Given AA mens increased risk and the uncertainty surrounding screening, it is critical to determine how to assist AA men in making an informed decision. We assessed the extent to which a sample of AA men wished to engage in SDM regarding PCS and the demographic and psychological characteristics associated with SDM preferences.

Enhancing informed choice to undergo health screening: A systematic review

OBJECTIVEnTo assess the effectiveness of health screening interventions aimed at enhancing informed choice.nnnMETHODSnStudies were selected if (1) they were randomized controlled trials conducted between January 1, 2000, and March 30, 2010, (2) participants in one arm underwent a prescreening intervention aimed at improving informed choice, and (3) informed choice was the primary outcome.nnnRESULTSnEight studies that met the inclusion criteria involved screening for prostate, colorectal and breast cancer, and diabetes. Five of the 8 prescreening interventions led to greater informed choice.nnnCONCLUSIONSnWith researchers mindful of the limited number of studies, findings were encouraging, but conclusions regarding the most effective ways of facilitating informed choice for screening are at best tentative.

Fostering informed decisions: A randomized controlled trial assessing the impact of a decision aid among men registered to undergo mass screening for prostate cancer

OBJECTIVEnScreening asymptomatic men for prostate cancer is controversial and informed decision making is recommended. Within two prostate cancer screening programs, we evaluated the impact of a print-based decision aid (DA) on decision-making outcomes.nnnMETHODSnMen (N=543) were 54.9 (SD=8.1) years old and 61% were African-American. The 2(booklet type: DA vs. usual care (UC))× 2(delivery mode: Home vs. Clinic) randomized controlled trial assessed decisional and screening outcomes at baseline, 2-months, and 13-months.nnnRESULTSnIntention-to-treat linear regression analyses using generalized estimating equations revealed that DA participants reported improved knowledge relative to UC (B=.41, p<.05). For decisional conflict, per-protocol analyses revealed a group by time interaction (B=-.69, p<.05), indicating that DA participants were less likely to report decisional conflict at 2-months compared to UC participants (OR=.49, 95% CI: .26-.91, p<.05).nnnCONCLUSIONnThis is the first randomized trial to evaluate a DA in the context of free mass screening, a challenging setting in which to make an informed decision. The DA was highly utilized by participants, improved knowledge and reduced decisional conflict.nnnPRACTICE IMPLICATIONSnThese results are valuable in understanding ways to improve the decisions of men who seek screening and can be easily implemented within many settings.