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

Abstract

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.

Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review

“…(Most measures previously developed by the team).• Awareness of genetic counselling average score = 9.1 (possible range of 4–16)• Heard/read about genetic counselling for breast/ovarian cancer risk, mean = 2.1 (possible range of 1–5)• Knowledge about genetic counselling, sample mean = 43.8 (possible range of 11–55)• Competing life concerns was the strongest predictor of intentions to make a genetic counselling appointment. Other significant predictors included perceived risk of carrying a BRCA mutation and having a physician referral for genetic counselling0.91Vadaparampil et al 2011 [47]USABreast and ovarian( n  = 45)Hispanic (Puerto Ricans from Tampa and Puerto Rico)FemaleHigh risk or experienced cancer.44.5% had personally experienced cancer.31.1% had a family history of breast cancer.4.4% had a family history of ovarian cancer.Average age = 31–50 years62.2% had at least some college education55.6% had an annual income >$20 kInvestigated knowledge, interest and attitudes toward genetic testing for hereditary breast and ovarian cancer.(Pilot study)Participants were recruited through community-based outreach methods and distribution of flyers.The study involved in-depth face-to-face interviews and structured quantitative surveys, but this article focusses just on the quantitative survey data.Included Powe Fatalism Inventory, a Familism scale and previously validated measures of hereditary cancer knowledge and attitudes towards genetic testing.• The average score for hereditary breast/ovarian cancer knowledge was 5.07 (out of 11).• Those with less than a high school education were significantly less knowledgeable about hereditary breast/ovarian cancer than those who graduated, and those who had had a diagnosis of breast cancer before age 50 were more knowledgeable than those without a diagnosis.• More participants reported that they strongly agreed/agreed with the positive attitudinal items (facilitators) compared to the negative attitudinal items (barriers), although this was not statistically significant.• The most commonly endorsed facilitator for genetic testing was a healthcare provider recommendation (100% Puerto Rico, 90% Tampa).• The most commonly endorsed barrier was that it might cost too much (32% Puerto Rico, 40% Tampa).0.90 Multiple groups Honda 2003[29]USAAny( n  = 31,886)66% White14% African American16.6% Hispanic3.5% Other52.1% femaleGeneral population: 9.8% report high risk of cancer.Average age = 30–49 years51.5% had at least some college education84.7% had health insurance75.3% had a family annual income >$20 kThe groups significantly differed on income, education and health insurance coverage.Investigated awareness of genetic testing for cancer risk.Used data from the National Health Interview Survey 2000.Survey carried out in participants’ homes.• Awareness of genetic testing for cancer risk by ethnicity:• 47.2% of White• 30.9% of African American• 19.1% of Hispanic• 30.5% of other• Awareness was significantly associated with race, education, immigration status, interpersonal exchange with a health care professional in past 12 months, and self-rated health status.• African American, Hispanic, and other ethnic groups were significantly less aware of genetic testing for cancer risk than Whites.0.95Huang et al 2014 […”

Identification of the prevalent BRCA1 and BRCA2 mutations in the female population of Puerto Rico

“…(14) In Puerto Rico, it was found that having a health care provider recommendation was an important factor in the decision to undergo breast cancer genetic testing. (70) The establishment of cancer genetic education programs for community clinicians can impact knowledge and practice. (71) Such programs could allow identifying individuals at high risk of hereditary cancer earlier and more efficiently in Puerto Rico.…”

Clinical Cancer Genetics Disparities among Latinos

“…Furthermore, the level of awareness has been shown to differ across US Latino subpopulations, with Puerto Ricans having the highest level of awareness of genetic testing, compared to Mexicans and Cubans (Vadaparampil et al 2006). In an additional study, knowledge of genetic testing was shown to not differ significantly between Puerto Ricans living in Tampa and Puerto Rican living in Puerto Rico, suggesting access to cancer genetic services might be key to disparities observed between the two groups (Vadaparampil et al 2011). …”