Protocol Number: 09-C-0074
-BRCA1/2 mutations are present in approximately 1 in 800 individuals in the US, with higher frequency among some populations (e.g., Ashkenazi Jews) -Mutations confer a lifetime breast cancer risk approaching 90%, ovarian cancer risk as high as 60%, and lesser increases in absolute risks of selected other cancers (e.g., male breast, prostate, pancreas). -Breast/Ovarian Cancer Pre-Vivors have not been diagnosed with cancer, but are aware of their high risk of developing cancer due to an inherited mutation. -Research on the experiences of young women, who face multiple challenges related to normative development in the context of their mutation-positive status, is scarce. --Breast/Ovarian Cancer Risk Perception: integral to decision-making, influenced by family cancer history --Couple Relationships: Anxiety re: finding a partner, disclosing mutation status, anticipatory loss --Family Formation: Pressure of societal, family, and relationship expectations and complicated overlap of issues between childbearing and cancer risk --Risk-management and -reduction: Options include surveillance, chemoprevention, and surgery; physician recommendations vary and no strategy eliminates risk. 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. Eligibility: -Age 18-35 -Able to speak/understand English fluently -Tested positive for a deleterious mutation in BRCA1 or BRCA2 -Contemplating or having experienced couple relationships, family formation, and/or risk management/reduction -Willing to have interview digitally recorded Design: -30-50 telephone interviews; 1-2 focus group sessions, each with max. 25 participants -Cohort interview study -Digitally-recorded telephone interviews stored and transcribed electronically -Analyzed using modified grounded theoretical design, QSR NVivo 2.0 software
Search The Studies | Help | Questions |
National Institutes of Health Clinical Center
Bethesda, Maryland 20892. Last update: 03/05/2009
|
||