Impact of Testing Positive for the BRCA1 or BRCA2 Mutation in Young Women Who Are BRCA1 or BRCA2 Mutation Carriers

OBJECTIVES:

- Recruit 30-50 BRCA1/2-positive women aged 18-35 to participate in a semi-structured,
qualitative methods interview study.

- Facilitate focus group including additional mutation-positive women (n = 25-50) to
provide feedback regarding results and analyses.

- Increase knowledge of young women's experiences in navigating the tasks and challenges
of young adulthood, within the context of their experiences as BRCA1/2 mutation
carriers, including family history, genetic testing, couple relationships, family
formation, and cancer risk management.

- Verify new information via focus groups with other mutation-positive individuals.

- Disseminate new knowledge via professional presentations and publications.

OUTLINE: Participants undergo telephone interviews for approximately 90 minutes, comprising
open-ended questions about demographic information and personal history of cancer; four
questions about the history of cancer in their families; experiences with genetic testing;
couple relationships, including experiences with disclosure of positive mutation status to
past, current, and/or future partners; nexus of experiences as mutation-positive and their
plans regarding family creation; and questions regarding the use of cancer risk-management
and risk-reducing strategies for qualitative analysis of couple and family treatment
strategies. Participants also undergo focus group sessions in-person at the Joining FORCEs
conference.

DISEASE CHARACTERISTICS:

- Completed genetic testing and received a positive test result (i.e., a deleterious or
disease-related mutation identified) for BRCA1 or BRCA2

- Experienced or contemplating/planning couple relationship(s), formation of a family,
and/or risk management/reduction strategies

- Meets ≥ 1 of the following criteria:

- Attended the Joining FORCEs 2009 Annual Conference in May 2009 (focus groups)

- Previously participated in the Clinical Genetics Branch of NCI Breast Imaging or
Hereditary Breast/Ovarian Cancer studies

PATIENT CHARACTERISTICS:

- Able to speak and understand English with a level of fluency sufficient for
completion of a recorded telephone interview

- Willing to have interview digitally recorded

PRIOR CONCURRENT THERAPY:

- Not specified