This study explored awareness of risk factors for hereditary breast and ovarian cancer (HBOC), awareness, knowledge and concerns about genetic testing, and preference for how to have genetic testing recommended by a care provider among at-risk Hispanic women. Differences in these factors among Mexican, Cuban, and Puerto Rican women were also examined. Women with a personal or family history of breast or ovarian cancer from the Tampa Bay Area participated in a qualitative interview (N=53). Data were analyzed using a combination of open and axial coding with a grounded theory approach. Study participants in all groups reported: being aware that family history was a breast cancer risk factor, limited knowledge of genetic testing, fear of test results, concerns about children's risks, and no physician referral for genetic testing. Noteworthy sub-ethnic differences included preferences for physician recommendation and information about genetic testing. This study provides important preliminary information about areas related to HBOC that require additional education in the Hispanic community as a whole and by sub-ethnicity.

Clinical trials hold great promise for cancer treatment; yet, Hispanic cancer patients have low rates of clinical trial participation. Lack of awareness and knowledge of clinical trials and language barriers may account for low participation rates. Patient education through audiovisual materials can improve knowledge of and attitudes toward clinical trials among Hispanic populations. In this study, 36 Hispanic cancer patients/survivors and caregivers in Florida and Puerto Rico participated in focus groups to aid in developing a Spanish-language DVD and booklet intervention designed to increase knowledge about clinical trials. Focus group results showed (a) low levels of knowledge about clinical trials, (b) uncertainty about why a physician would expect a patient to make a choice about treatment, and (c) desire for family participation in decision making. Respondents expressed various preferences for aspects of the DVD such as showing extended family in the DVD and physician explanations about key terms. On the basis of these preferences, the authors developed a creative brief for a DVD. The content of the DVD was reviewed by Hispanic community leaders and key stakeholders. A final DVD was created, in Spanish, using Hispanic patients and physicians, which contained the information deemed important from the focus groups and stakeholder interviews. The DVD is complete with companion booklet and currently undergoing a randomized control trial.

This study explored baseline levels of knowledge and attitude toward genetic testing (GT) for hereditary breast and ovarian cancer among Puerto Rican women. A secondary aim was to evaluate whether these factors differed between respondents in Puerto Rico and Tampa. Puerto Rican women with a personal or family history of breast or ovarian cancer who live in Puerto Rico (n=25) and Tampa (n=20) were interviewed. Both groups were interested in obtaining GT; women living in Puerto Rico were more likely to report they would get GT within 6 months (p=0.005). The most commonly cited barrier was cost; the most commonly cited facilitator was provider recommendation. There was no difference in overall knowledge between Tampa (M=5.15, SD=1.63) and Puerto Rico (M=5.00, SD=1.87) participants (p=0.78). Involving health care providers in recruitment and highlighting that GT may be available at minimal or no cost in the USA and Puerto Rico may facilitate participation.

Purpose: To examine knowledge about hereditary breast and ovarian cancer (HBOC) among Mexican, Puerto Rican, and Cuban women. Methods: Women (age range, 18-65 years) with a personal or family history of breast or ovarian cancer were recruited to a mixed methods study using community-based approaches. Fifty-three women participated in the study: 16 Mexicans, 20 Puerto Ricans, and 17 Cubans. The majority of women (64.2%) were born outside the United States. All questions were interviewer administered in Spanish or English. HBOC knowledge was measured using an 11-item instrument developed by the National Center for Human Genome Research. We evaluated whether differences in knowledge varied as a function of Hispanic subethnicity, demographic characteristics, and medical and acculturation characteristics using a series of one-way analysis of variances. Results: The percentage of correct responses on the knowledge instrument ranged from 9.4% to 73.6% (median number of correct responses ¼ 45%). Knowledge did not significantly differ by Hispanic subethnicity ( p ¼ 0.51). Exploratory analysis revealed lower knowledge in women with a personal history of cancer ( p ¼ 0.03). Conclusion: Our study provides important information about characteristics associated with lower levels of knowledge and specific areas related to HBOC where additional education may be warranted in the Hispanic community.

Purpose This study examined changes in cancer-related knowledge, distress, and decisional conflict from pretest- to post-genetic counseling (GC) in before definitive surgery (BDS) and after definitive surgery (ADS) breast cancer (BC) patients. Methods Sociodemographic and clinical characteristics were collected at baseline; primary outcome data were collected before (T1) and after (T2) pretest GC. Within group changes for cancer-related knowledge, distress, and decisional conflict over GT were compared using Wilcoxon signed-rank tests. Results Of 103 BC patients, 87 were ADS and 16 were BDS patients. Analyses revealed that both groups reported significant increases in knowledge between T1 and T2 (median change = 4.2, p = .004, and 2.7, p < .001, for BDS and ADS patients, respectively). Overall cancer-related distress showed a downward trend between T1 and T2 for both groups and was significant for BDS patients (p = .041). Reports of BDS patients trended toward overall and subscale-specific increases in decisional conflict, with the exception of the uncertainty which trended downward, but did not reach significance. Overall decisional conflict decreased in ADS patients, approaching marginal significance (p = .056), with significant improvements in informed decision making (median change = -12.6, p < .001; i.e., pretest GC yielded improved knowledge of benefits, risks, and side effects of available options). Conclusions These pilot data suggest that pretest GC increases cancer-related knowledge for both BDS and ADS patients, decreases distress in BDS, and improves informed decision making in ADS patients. Future studies with larger sample sizes are needed to replicate these results.