Abstract
Background: Recent evidence suggests Hispanic women with a personal history of breast cancer have the highest prevalence rate of BRCA mutations when compared to other racial/ethnic groups in the U.S. On the island of Puerto Rico, efforts are underway to identify the prevalence of BRCA mutations for this subgroup of Hispanic women. The ultimate goal of this work is to have BRCA genetic counseling and testing available as a clinical service for high risk Puerto Rican women. Therefore, it is important to document current levels of knowledge and interest in genetic testing among women who may potentially utilize these services. The purpose of this pilot study was to examine aspects of knowledge about hereditary breast and ovarian cancer (HBOC) and interest in obtaining genetic testing for HBOC in a group of Puerto Rican women.
Methods: Puerto Rican women (n=25) with a personal or family history of breast/ovarian cancer were recruited thorough community based outreach methods to participate in a mixed method interview about HBOC. Knowledge was assessed using the National Center for Human Genome Research Cancer Genetics Studies Consortium Knowledge Scale and interest in genetic testing was measured using single item asking participants how likely they would be to engage in genetic testing if it were offered to them in the next six months, followed by a series of items related to the benefits and barriers associated with genetic testing.
Results: Respondents ranged in age from 21–65 with a mean age of 51. 48% were breast cancer survivors; 12% ovarian cancer survivors, and 36% with a family history. 92% were born in Puerto Rico. On average 75% of the sample incorrectly answered knowledge related questions about HBOC and risk reduction.
100% of respondents agreed they would seek genetic testing within the next 6 months if it were available and 100% agreed they would have the genetic test if their doctor or health care provider recommended it. The most commonly cited benefit associated with genetic testing was potential to be useful to make choices about the health care for children. The most commonly cited barrier was associated with cost with 32% agreeing that would be the most significant barrier and 24% being unsure.
Conclusions: The data from this study suggest Puerto Rican women are interested in obtaining genetic testing, however are not fully informed about several aspects of hereditary breast and ovarian cancer risk and management. Thus, this pilot study suggests a need for accurate information about hereditary breast and ovarian cancer to make informed decisions about genetic testing. Currently BRCA1/2 genetic counseling and testing are not readily available in Puerto Rico. This study represents an important first step in documenting key educational issues before testing is widely available.
Second AACR International Conference on the Science of Cancer Health Disparities— Feb 3–6, 2009; Carefree, AZ