Introduction
There are a number of strategies that women with a vastly increased risk of familial breast cancer, particularly those with BRCA 1 and 2 gene mutations, may choose to protect themselves. The main risk management strategies have very different risk and benefit profiles and include enhanced imaging surveillance, use of chemoprevention (SERMs or AIs) and risk reducing surgery. Knowledge of hereditary breast cancer risk and cancer anxiety can impact on quality of life. Options for managing this elevated risk, whilst effective, may have long-term psychosocial consequences. This study aimed to explore the impact of living at risk, to identify the psychosocial outcomes for this group of women and for their partners and to assess factors that impact on risk management decisions and their ultimate decision satisfaction.
Methodology
A sequential exploratory mixed methods study was used, including a systematic review, a qualitative phase of study, using in-depth, semi-structured interviews with women and partners of women at high risk who had faced these choices, questionnaire development including focus group review and finally a quantitative phase of study using the questionnaire to explore associations and to assess the generalisability of the strength of these findings. (See figure 0.1).
Results
Generally psychosocial outcomes are acceptable to women with high levels of decision satisfaction, but for a minority, risk reducing measures result in long-term psychosocial morbidity. The more common causes of distress include adverse body image changes, generalised and cancer-specific anxiety and distress. Good support, particularly that of a partner, can reduce this negative impact. Partners struggle to balance existing commitments with the time demands of providing this support.
Conclusion
Recognising women at increased risk of adverse effects related to their choice of risk management strategy may allow targeted support to enable women to better understand and manage their risk with a reduction in associated psychosocial distress.
