Systematic review of the empirical investigation of resources to support decision-making regarding BRCA1 and BRCA2 genetic testing in women with breast cancer

Abstract

Objective: Identify existing resources developed and/or evaluated empirically in the published literature designed to support women with breast cancer making decisions regarding genetic testing for BRCA1/2 mutations.

Methods: Systematic review of seven electronic databases. Studies were included if they described or evaluated resources that were designed to support women with breast cancer in making a decision to have genetic counselling or testing for familial breast cancer. Outcome and process evaluations, using any type of study design, as well as articles reporting the development of decision aids, were eligible for inclusion.

Results: Total of 9 publications, describing 6 resources were identified. Resources were effective at increasing knowledge or understanding of hereditary breast cancer. Satisfaction with resources was high. There was no evidence that any resource increased distress, worry or decisional conflict. Few resources included active functionalities for example, values-based exercises, to support decision-making.

Conclusion: Tailored resources supporting decision-making may be helpful and valued by patients and increase knowledge of hereditary breast cancer, without causing additional distress.

Practice implications: Clinicians should provide supportive written information to patients where it is available. However, there is a need for robustly developed decision tools to support decision-making around genetic testing in women with breast cancer.

Keywords: BRCA1; BRCA2; Breast cancer; Decision aid; Decision support; Treatment-focused genetic testing.