Following the life course of BRCA1/2-mutation positive women: A qualitative follow-up study

Authors

• JL Young
• A Werner-Lin
• R Mueller
• MH Greene
• NB Epstein
• K Roy

Abstract

Women are faced with difficult health care decisions after learning that they are carriers of a deleterious BRCA1/2 mutation. These decisions can have a profound effect on a woman’s life course, including: the timing of family planning, fertility maintenance, breast-feeding, and whether and when to undergo recommended cancer risk-reducing surgical procedures (i.e., bilateral mastectomy, bilateral salpingo-oophorectomy). The goal of this qualitative research study was to gain insight into the dynamic nature of being a mutation carrier during the reproductive years. Specifically, this study examined the evolution of risk perceptions, risk management, and family planning decisions over a three-year period. Semi-structured interviews were conducted at two time points with 12 young BRCA1/2-positive women (ages 21 to 35 at first interview). Three qualitative researchers employed open and focused coding to analyze the verbatim transcripts. Three overarching themes were identified: “The New Normal” captured the adjustment process of living with increased personal vigilance and cancer screening; “Intersections” captured friction between risk-reducing behaviors and plans for pregnancy, breast-feeding, and child rearing; and analysis revealed “Variability” over time in social support, coping styles, and distress. These findings suggest that during their reproductive years, young women’s knowledge of their BRCA1/2-positive mutation status repeatedly intersects with and modulates decision-making processes regarding cancer risk management and family planning. These themes, if confirmed in larger populations, can inform targeted medical and psychosocial interventions and support developmentally informed risk-related treatment decisions for all BRCA1/2 mutation carriers and their health care providers.

Scientific Focus Area: Social and Behavioral Sciences

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