Decision Aids for Preventive Treatment Alternatives for BRCA1/2 Mutation Carriers: a Systematic Review

Abstract

Introduction Women with a pathogenic BRCA1/2 mutation have a markedly increased lifetime risk of developing breast and/or ovarian cancer. The current preventive treatment alternatives that are offered are an intensified breast cancer screening programme and risk-reducing operations. Before deciding on one option, medical and personal factors such as life situation and individual preferences must be weighed carefully. Decision aids are used internationally to support BRCA1/2 mutation carriers during their decision-making process. In this study these are analysed structurally for the first time and their applicability to the German context is examined. Material and Methods A systematic literature search in five electronic databases and a manual search were performed. The identified decision aids were evaluated with regard to formal criteria, medical content and quality. The qualitative assessment used the criteria of the International Patient Decision Aid Standards Collaboration (IPDASi v4.0), which examined various dimensions (e.g., information, probabilities, values). Results Twenty decision aids, which were published between 2003 and 2019 in Australia (n = 4), the United Kingdom (n = 3), Canada (n = 2), the Netherlands (n = 2) and the USA (n = 9), were included. Nine focus on BRCA1/2 mutation carriers and eleven include other risk groups. Eighteen include risk-reducing operations as decision options, 14 list screening methods for breast and/or ovarian cancer, and 13 describe the possibility of pharmacological prevention by means of selective oestrogen receptor modulators or aromatase inhibitors. Nine of the 20 decision aids meet fundamental quality criteria (IPDASi v4.0 qualification criteria). Conclusion International decision aids can serve formally as a basis for a German decision aid for BRCA1/2 mutation carriers. Some of them differ markedly in content from the recommendations of German guidelines. Only a few achieve a high quality.

Implementing mainstream genetic counseling within the area‐wide network of the German Consortium Hereditary Breast and Ovarian Cancer (GC‐HBOC): Satisfaction of primary care providers with the provided state‐of‐the‐art training by the Cologne Center

“…Participants requested lectures on risk communication and preference‐sensitive decision‐making (Kautz‐Freimuth et al., 2022; Krassuski et al., 2021; Stracke et al., 2022). These clinical case presentations addressing contralateral BC risk and competing risk factors received very high ratings.…”

Exploring the role of a multidisciplinary hereditary gynecologic oncology clinic in epithelial ovarian cancer risk‐reducing surgical decision‐making practices: A mixed‐methods study

“…Undecided individuals might appreciate additional support, to explore readiness for risk reducing surgery before the next step of making an appointment at the HGC, such as engaging with a decision-aid (Culver et al, 2011;Harmsen et al, 2018;Krassuski et al, 2021). et al, 2007).…”

“…Undecided individuals might appreciate additional support, to explore readiness for risk reducing surgery before the next step of making an appointment at the HGC, such as engaging with a decision‐aid (Culver et al, 2011; Harmsen et al, 2018; Krassuski et al, 2021). For example, Culver et al (2011) designed a web‐based aid as an adjunct to genetic counselling, which includes a values and preferences exercise to help individuals learn whether they are “decided” or “undecided.” Participants rank contextual factors, such as cancer risk, cancer worry, fertility and family planning and surgical outcomes, and then receive information and recommended next steps.…”

Evaluation of two evidence-based decision aids for female BRCA1/2 mutation carriers in Germany: study protocol for a randomised controlled parallel-group trial

“…In order to support BRCA1/2 mutation carriers during their complex decision-making process in choosing a preventive option and the right time to do so, a number of supportive tools, in particular, decision aids (DAs), have been developed internationally [30][31][32][33][34][35][36]. A systematic review on DAs for women with BRCA1/2 mutations identified four RCTs and one pretest-post-test study that assessed the effectiveness of DAs on decision-, knowledge-and health-related criteria.…”