Awareness and preferences regarding BRCA1/2 genetic counseling and testing among Latinas and non-Latina white women at increased risk for hereditary breast and ovarian cancer.

This study was an investigation of awareness, cognitions, and psychosocial and educational needs related to genetic counseling and testing among Latinas and non-Latina whites at increased risk for having a BRCA1/2 mutation. Sixty-three Latina and eighty-four non-Latina white women completed telephone surveys employing a mixture of quantitative and qualitative questions assessing awareness, benefits, risks, barriers, and genetic counseling communication preferences regarding BRCA1/2 testing. Among participants who had not previously had genetic counseling/testing, 56.9% of Latinas (29/51) and 34.8% of non-Latina white participants (24/69) were unaware of the availability of BRCA1/2 testing. In multivariate logistic regression analysis, Latina ethnicity was the only statistically significant independent factor associated with lack of awareness (OR = 0.42; 95% CI = 0.19-0.35). No appreciable differences were noted between ethnic groups regarding perceived benefits of BRCA1/2 testing or desired genetic counseling topics. These findings underscore the importance of increasing awareness of cancer genetic counseling and genetic testing among both Latina and non-Latina white populations.

Exploring attitudes, beliefs, and communication preferences of Latino community members regarding BRCA1/2 mutation testing and preventive strategies.

PURPOSE: To inform development of a culturally sensitive hereditary breast and ovarian cancer communication initiative and related clinical genetic services. METHODS: Five focus groups were conducted with 51 female and male Latinos. Educational materials were designed to communicate information about hereditary breast or ovarian cancer and availability of relevant clinical services or prevention strategies. Focus groups explored participants' knowledge, attitudes, and beliefs about hereditary breast and ovarian cancer, BRCA1/2 testing, and communication preferences for hereditary breast and ovarian cancer health messages. RESULTS: Overall, awareness of familial breast and ovarian cancer and availability of genetic risk assessment was low. Once informed, participants held favorable attitudes toward risk assessment and counseling services. Critical themes of the research highlighted the need to provide bilingual media products and use of a variety of strategies to increase awareness about hereditary cancer risk and availability of clinical genetic services. Important barriers were identified regarding family cancer history communication and cancer prevention services. Strategies were suggested for communicating cancer genetic information to increase awareness and overcome these barriers; these included both targeted and tailored approaches. CONCLUSION: This research suggests that cancer genetic communication efforts should consider community and cultural perspectives as well as health care access issues before widespread implementation.

Development of a culturally tailored genetic counseling booklet about hereditary breast and ovarian cancer for Black women.

Printed educational materials (PEM) can serve as important tools to enhance and reinforce information presented during genetic counseling (GC) for BRCA1/2 testing, yet few such materials have been specifically developed for the Black community. The goal of the current study was to develop a BRCA1/2 genetic education booklet for Black women at increased risk for hereditary breast and ovarian cancer (HBOC). Investigators identified available PEM about BRCA1/2 targeted toward Blacks. To obtain possible perspectives of the target population regarding modified and newly developed materials, a Community Advisory Panel (CAP) comprising breast cancer survivors, advocates, and community leaders was convened. While the CAP felt PEM were an important adjunct to GC, the panel recommended developing materials that were more personalized and relevant to Black women. A 12-page booklet that follows the flow of a standard GC session was developed; it includes a limited amount of technical information, incorporates familiar terms and images to describe key concepts, and contains vignettes and photographs of Black women. Upon review of the newly developed booklet, CAP members agreed their input had been well implemented, and only had minor suggestions. The booklet is currently being used in a population-based study of BRCA1/2 mutations among Black women diagnosed with early-onset breast cancer. Involving members of the target community is critical to the development of culturally tailored PEM. Further evaluation of the utility of our booklet in increasing awareness and understanding of HBOC and promoting informed decision-making regarding genetic testing and medical management among Black women is needed.

Rural-urban differences in colon cancer risk in blacks and whites: the North Carolina Colon Cancer Study.

CONTEXT: Geographic and racial variations in cancer incidence have been observed. Studies of colorectal carcinoma indicate a higher incidence and mortality rate for blacks than for whites in the United States. PURPOSE: We evaluated the effect of rural versus urban residence on colon cancer risk and stage of disease at diagnosis in blacks and whites. METHODS: Interviews were conducted with 558 colon cancer cases and 952 controls enrolled in the North Carolina Colon Cancer Study, a population-based case-control study of blacks and whites residing in 33 contiguous counties. FINDINGS: Residence in a rural area was associated with increased colon cancer risk (odds ratio, 1.4; 95% confidence interval, 1.1-1.8). This association was no longer significant after controlling for recent use of colorectal cancer screening tests (odds ratio, 1.2; 95% confidence interval, 0.9-1.6). Risk estimates were not modified by race nor were they markedly different for extent of disease at diagnosis. However, colorectal cancer screening rates were lower for blacks than for whites. CONCLUSION: Our findings suggest that rural blacks and whites are at increased risk of colon cancer regardless of stage of disease at diagnosis than their urban counterparts; this relationship may be mediated by screening behavior.

Social ties and colorectal cancer screening among Blacks and Whites in North Carolina.

Few studies have examined the relationship between social networks and colorectal cancer screening in diverse populations. Prior research suggests that the type of social support as well as the amount or frequency of support available from one's social network may be associated with health outcomes. Therefore, the current study examined relationships between both structural (i.e., quantitative aspects of the social network, such as number of ties and frequency of contact with ties) and functional (i.e., functions provided by social network ties, such as offering emotional or instrumental support) aspects of social ties and utilization of colorectal cancer screening tests. Analyses included 697 randomly selected Blacks and Whites ages 51 to 80 years enrolled as controls in the North Carolina Colon Cancer Study. Social tie and screening information was obtained from face-to-face interviews. Forty-seven percent of participants (40% Blacks and 51% Whites) reported use of one of the options for colorectal cancer screening according to the guidelines at that time. Compared with those with the fewest social connections, those who were most socially connected were more likely to report recent use of colorectal cancer screening [odds ratio (OR), 3.2; 95% confidence interval (95% CI), 1.7-6.2]. This association was stronger among Blacks (OR, 3.8; 95% CI, 1.3-10.7) than Whites (OR, 2.9; 95% CI, 1.2-6.9; P for interaction = 0.006). There were also positive associations between being a church group (OR, 1.9; 95% CI, 1.4-2.7) and other group member (OR, 1.6; 95% CI, 1.1-2.2) and screening. Neither emotional (e.g., offering reassurance that one is cared for) nor instrumental (e.g., giving material assistance) support was associated with screening behavior. These data suggest that structural rather than functional aspects of social ties may be important in influencing colorectal cancer screening behavior.

Psychosocial aspects of genetic counseling and testing.

OBJECTIVES: To highlight areas where persons who undergo BRCA1/2 mutation testing may benefit from psychosocial or behavioral support and intervention. DATA SOURCES: Published scientific literature, cal, and research experiences. CONCLUSION: Key psychosocial areas that deserve attention by clinicians and researchers include: indeterminate or inconclusive test results, selection of risk management strategies in unaffected BRCA1/2 mutation carriers, and genetic testing in minority communities. IMPLICATIONS FOR NURSING PRACTICE: By addressing the psychosocial issues faced by patients undergoing genetic testing for cancer, nurses have the potential to maximize opportunities for prevention, early detection, and healthy coping.

Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred.

Clinical availability of genetic testing for cancer predisposition genes is generating a major challenge for U.S. health care systems to provide relevant genetic services to underserved populations. Here we present rates of study enrollment and utilization of genetic testing in a research study on BRCA1 testing acceptance in one large kindred. We also present data on baseline access to genetic information as well as enabling and obstructing factors to study enrollment. The study population included female and male members of an African American kindred based in the rural southern United States with an identified BRCA1 mutation. A combination of quantitative and qualitative data were collected and analyzed. Of the 161 living, eligible, and locatable kindred members, 105 (65%) enrolled in the study. Family, personal, and educational motivations were the most commonly endorsed reasons for study participation. The most commonly cited reasons for refusal to participate in the study were: lack of interest, time constraints, and negative experiences with prior participation in genetic research. Eighty three percent of the participants underwent BRCA1 testing. In multiple logistic regression analysis, age 40-49 (odds ratio (OR) = 6.9; 95% confidence interval (CI) = 1.2-39.5), increased perceived risk of being a BRCA1 mutation carrier (OR = 4.1; 95% CI = 1.1-14.6), and high cancer genetics knowledge levels (OR = 1.5; 95% CI = 1.1-2.3) were associated with BRCA1 testing acceptance. The results of this study indicate that cognitive and demographic factors may influence genetic research participation and genetic testing decisions among African Americans who are at increased risk of carrying a deleterious BRCA1 mutation.

Risk reduction behaviors and provider communication following genetic counseling and BRCA1 mutation testing in an African American kindred.

Little is known about the impact of cancer genetic counseling and testing on health behaviors in racial and ethnic subgroups. This prospective observational study examined use of risk reduction strategies following BRCA1 counseling and testing. Participants were female members of an African American kindred who received genetic education, counseling and testing (n = 40) and completed a 1-year follow-up interview. Mutation carriers were more likely to opt for breast (100%, 7/7) and ovarian (25%; 1 of 4) cancer surveillance than prophylactic surgery. Following genetic counseling, 71% (5/7) of the BRCA1 carriers who opted for surveillance reported having a mammogram within the year following receipt of their genetic test results. Ovarian cancer screening among mutation carriers increased from 0% at baseline to 25% (one of four) at 1 year. Compared to noncarriers (23%, 7/30), carriers (70%, 7/10) were more likely to discuss their BRCA1 test results with their primary health care providers. Surveillance for breast cancer was preferred to prophylactic surgery and chemoprevention as a way to reduce risk for these cancers. Our data indicate that patient-provider communication about BRCA1 test results is suboptimal.

The impact of receiving genetic test results on general and cancer-specific psychologic distress among members of an African-American kindred with a BRCA1 mutation.

BACKGROUND: Numerous studies have examined short-term and long-term psychologic responses to genetic testing for breast/ovarian carcinoma susceptibility in clinic samples and among families who participated in genetic linkage studies. However, to the authors' knowledge, the vast majority of studies focused on non-Latino whites and women. In this prospective study, the authors investigated the psychologic impact of receiving carrier-specific BRCA1 test results as part of a genetic education/counseling intervention in female and male members of an African-American kindred with a BRCA1 mutation. METHODS: Eighty-five of 101 participating kindred members (84%) underwent genetic counseling/education and testing according to an established protocol. Participants completed in-person or telephone-administered, computer-assisted interviews. At baseline and after the receipt of test results (1 mo, 4 mos, and 12 mos), general psychologic distress (i.e., anxiety and depression) and cancer-specific distress were measured. Statistical analyses were performed using linear mixed-model approaches for longitudinal data. RESULTS: The hypothesis that mutation carriers, particularly women who had no personal history of breast carcinoma, were expected to report greater distress than noncarriers was not supported. After controlling for socioeconomic status and personal history of breast/ovarian carcinoma, noncarriers reported significant declines in the distress measures (depressive symptoms, anxiety and cancer-related worries), whereas distress was not altered markedly in carriers after genetic risk notification. CONCLUSIONS: The current findings suggested that individuals receiving BRCA1 test results who learn that they are not carriers of a deleterious mutation may experience psychologic benefits. Furthermore, those who learned that they were mutation carriers did not appear to have adverse, clinically meaningful psychologic outcomes.

Developing culturally sensitive cancer genetics communication aids for African Americans.

The goal of this project was to develop educational materials to communicate genetic health information in a culturally sensitive manner. These materials were designed to communicate information about cancer risk, genetic testing options, and health management options in an African American kindred with a known BRCA1 mutation. Educational materials were pilot-tested in four African American focus groups varying in socioeconomic status and gender. The audiotaped focus groups consisted of presentation of the educational materials, followed by a feedback session led by an African American facilitator. Qualitative analysis of the focus group transcripts identified important themes and the educational materials were revised in response to the participants' suggestions. The products included a booklet and a flip chart for use in educational sessions. Focus group participants recommended a substantial reduction in technical detail, and recommended that information be personalized and made relevant to the lives of the target population. Other critical themes included the importance of building trust in the medical system and avoiding words and images that have strong negative associations in the African American community. Strategies that were successful included nontechnical images to explain genetic concepts, clip art images to energize and personalize word slides, vibrant color, identifiably African American figures, and the development of themes relevant to many African Americans. The use of these materials in an ongoing study offering BRCA1 counseling and testing to a large, rural Louisiana-based kindred will provide additional feedback about the effectiveness of the culturally tailored genetic education and counseling materials.

Screening behaviors among African American women at high risk for breast cancer: do beliefs about god matter?

PURPOSE/OBJECTIVES: To examine the relationship between beliefs about God as a controlling force in health and adherence to breast cancer screening among high-risk African American women. DESIGN: Cross-sectional cohort. SETTING: In-person interviews in rural, southeastern Louisiana and telephone interviews conducted at the University of Utah. SAMPLE: 52 females who were members of a large kindred with a BRCA1 mutation; no subjects had breast cancer. METHODS: Survey through in-person or telephone interviews. MAIN RESEARCH VARIABLES: Belief in God as a controlling agent over health measured by the God Locus of Health Control (GLHC) scale; screening behaviors measured by self-report. Adherence was based on consensus-approved recommendations for BRCA1 carriers or women at risk of being carriers. FINDINGS: Bivariate analysis indicated that presence of a primary care provider and low GLHC scores were associated with seeking clinical breast examination (CBE) and mammography. With the variable "presence of a primary care provider" excluded, GLHC scores were inversely associated with seeking CBE and mammography. CONCLUSIONS: African American women at increased risk for breast cancer and with high GLHC scores may have a decreased inclination to adhere to CBE and mammography recommendations. IMPLICATIONS FOR NURSING: Assessing religious and spiritual beliefs and incorporating belief systems into education and counseling sessions may improve understanding and acceptance of presented material.

Roles of religious involvement and social support in the risk of colon cancer among Blacks and Whites.

This population-based case-control study of Blacks and Whites in North Carolina (1996-2000) examined the relation between social ties, etiology of colon cancer, and stage of disease at diagnosis. Interviews were conducted with 637 cases and 1,043 controls. Information was collected on two dimensions of social ties, structural (network) dimensions and functional (emotional and tangible help) dimensions. Infrequent attendance at religious services (less than once per month) was associated with a regional/advanced stage of colon cancer at diagnosis in Whites (odds ratio (OR) = 1.67, 95% confidence interval (CI): 1.09, 2.57; p for trend = 0.02) but not in Blacks (OR = 1.21, 95% CI: 0.66, 2.21; p for trend = 0.80). Among Blacks, minimal emotional support was strongly associated with risk of colon cancer (OR = 4.62, 95% CI: 2.06, 10.35; p for trend < 0.001) and with both local (OR = 3.69, 95% CI: 1.08, 12.69; p for trend < 0.001) and advanced (OR = 5.10, 95% CI: 2.03, 12.82; p for trend < 0.01) disease. No associations between emotional support and risk of colon cancer or stage of disease were observed among Whites. These results suggest that certain characteristics of social ties are associated with both risk of and prognostic indicators for colon cancer.