Preferences for Hereditary Breast and Ovarian Cancer Information among Mexican, Cuban and Puerto Rican Women at Risk

Abstract

Background: Little is known about the preferences of at-risk Hispanic women to gain information on hereditary breast and ovarian cancer (HBOC). Aims: This study sought to qualitatively explore preferences for HBOC information among at-risk Mexican, Puerto Rican and Cuban women and to pilot a mock brochure aimed at Hispanic women. Methods: Hispanic women aged 18–65 years with a personal or family history of breast or ovarian cancer participated in a semistructured interview. Data were analyzed using a combination of open-coding and content analysis. Results: Fifty-three women participated in the study. For the majority of content areas, there were no major differences between the subethnicities. All women reported discussing cancer with a doctor after a family member had been diagnosed and discussing cancer within their families; however, the content of the discussion varied. Cuban and Puerto Rican women reported using the Internet routinely for health care information while Mexican women said they did not have access to computers and did not use them. All women liked the content and photos in the brochure but Mexican women thought the reading level was too high. Preferences for the spokesperson focused on the need for Spanish-speaking health care providers. Conclusions: While the data show some similarities, such as patterns of cancer discussion and appreciation of the mock brochure, there were differences between the groups on information preferences. In designing HBOC education information for Hispanic audiences, it is important to consider varied channels for dissemination and preferences for specific types of information across subethnicities.

A pilot study of knowledge and interest of genetic counseling and testing for hereditary breast and ovarian cancer syndrome among Puerto Rican women

“…Through an NCI-funded cooperative agreement, the PSM-MCC Partnership is a collaboration between a minority-serving institution (PSM) and an NCI-designated comprehensive cancer center (MCC) to address cancer-related health disparities among Hispanics. The Tampa-based team of the MCC had an existing study to identify differences in knowledge and attitudes toward HBOC and GT in a multiethnic sample of Hispanic women in Tampa (Quinn et al 2011;Vadaparampil et al 2010a, b). The Puerto Ricobased team of the PSM is conducting a study aimed at identifying the prevalent BRCA mutations in Puerto Rico and at evaluating available models of carrier risk assessment in this population.…”

“…The Puerto Ricobased team of the PSM is conducting a study aimed at identifying the prevalent BRCA mutations in Puerto Rico and at evaluating available models of carrier risk assessment in this population. Based on these mutual interests, a sample of women were recruited from Puerto Rico and compared with the subsample of Puerto Rican participants from the multiethnic study of Hispanics in Tampa (Quinn et al 2011;Vadaparampil et al 2010a, b). The information collected in this project was intended to inform future population-based studies to better define the prevalence and penetrance of BRCA mutations specific to Puerto Rico.…”

“…Additional details about the recruitment and results for the Puerto Rico- (August et al 2011) and Tampa-based (Quinn et al 2011;Vadaparampil et al 2010a, b) samples can be found in additional reports. Eligible participants were Hispanic women who: (a) were between 21 and 65 years old, (b) resided in Puerto Rico or Tampa, (c) had a personal diagnosis of breast cancer at ≤age 50 or ovarian cancer at any age or had at least one first-degree relative (FDR; mother, sister, daughter) diagnosed with breast cancer before age 50 or at least one FDR diagnosed with ovarian cancer at any age, (d) self-identified as Puerto Rican, and (e) had not previously had genetic counseling and/or GT for hereditary cancer.…”

Challenging Low Health Literacy in Rural Honduras: The Utilization of Charlas (Chats) for Patient-Centered Care

“…Research by Quinn et al (2011) found that a majority of Latino women preferred to receive health information where it was discussed in a charla. Being that sexual education and family planning are taboo topics in Honduras, especially among rural areas, the charla provided a setting where both men and women can learn about sexual disease prevention in a medical context.…”

Challenges in recruiting Mexican women for cancer genetics research

“…Lack of information on health behaviors and risk perception may be due to low participation rates among Hispanic women in cancer-related research (Underwood 2000). Furthermore, because participation rates have been low among Hispanics as a whole, the efficacy of some cancer-related treatments has not been ascertained within this group, and there are some pharmaceutical studies suggesting racial and ethnic differences in tolerance and efficacy with medications (Tejeda et al 1996;Lahn & Ebenstein 2009;Phan et al 2009). …”