Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2

Purpose: This study examined baseline knowledge, beliefs, and risk percepti ons among a group of 200 women with breast and/or ovarian cancer who partic ipated in a trial designed to improve decision making about genetic testing for BRCA1 and BRCA2. Patients and Methods: Women were identified by self-referral, physician ref erral, and tumor registry extraction and invited to participate in a random ized trial in which testing for BRCA I and BRCA2 was offered free of charge , Subjects completed baseline questionnaires and interviews that assessed k nowledge, attitudes, and perceptions of risk of having an alteration in BRC A1 or BRCA2. Results: Sixty percent of women overestimated their chances of having a BRC A1 or BRCA2 mutation compared with estimates from a BRCA 1/BRCA2 risk model . Women who have at least three relatives with breast or ovarian cancer wer e one third (95% confidence interval, 0.2 to 0.6) as likely to overestimate their risk of having a BRCA1 or BRCA2 mutation compared with women who hav e two or fewer affected relatives. Knowledge wets limited about BRCA1 and B RCA2 mutations and cancer risk associated with gene mutations, Eighty-four percent of the women indicated a probable or definite interest in testing. Conclusion: A high proportion of the high-risk women in this study had know ledge deficits about BRCA1 and BRCA2 and overestimated their risk of having a mutation, Although some degree of caution should be used in generalizing the results of this study to practice settings, the data provide insight i nto the challenges clinicians will face in communicating with patients abou t cancer genetics. (C) 1999 by American Society of Clinical Oncology.