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. 2021 Jun 5;21(1):180.
doi: 10.1186/s12911-021-01528-4.

Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making

Sibylle Kautz-Freimuth  1 , Marcus Redaèlli  2 , Kerstin Rhiem  3 , Andrea Vodermaier  2   4 , Lisa Krassuski  2 , Kathrin Nicolai  2 , Miriam Schnepper  2 , Violetta Kuboth  3 , Julia Dick  3 , Vera Vennedey  2 , Regina Wiedemann  3 , Rita Schmutzler  3 , Stephanie Stock  2
Affiliations

Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making

Sibylle Kautz-Freimuth et al. BMC Med Inform Decis Mak. .

Abstract

Background: Women with pathogenic BRCA1 and BRCA2 mutations possess a high risk of developing breast and ovarian cancer. They face difficult choices when considering preventive options. This study presents the development process of the first decision aids to support this complex decision-making process in the German healthcare system.

Methods: A six-step development process based on the International Patient Decision Aid Standards was used, including a systematic literature review of existing decision aids, a topical medical literature review, preparation of the decision aids, focus group discussions with women with BRCA1/2 mutations, internal and external reviews by clinical and self-help experts, and user tests. All reviews were followed by iterative revisions.

Results: No existing decision aids were transferable to the German setting. The medical research revealed a need to develop separate decision aids for women with BRCA1/2 mutations (A) without a history of cancer (previvors) and (B) with a history of unilateral breast cancer (survivors). The focus group discussions confirmed a high level of approval for the decision aids from both target groups. Additionally, previvors requested more information on risk-reducing breast surgery, risk-reducing removal of both ovaries and Fallopian tubes, and psychological aspects; survivors especially wanted more information on breast cancer on the affected side (e.g. biological parameters, treatment, and risk of recurrence).

Conclusions: In a structured process, two target-group-specific DAs for previvors/survivors with BRCA1/2 mutations were developed to support decision-making on risk-adapted preventive options. These patient-oriented tools offer an important addition to existing specialist medical care in Germany.

Keywords: BRCA1; BRCA1/2 mutation carriers; BRCA2; Decision aids; Development process; Hereditary breast and ovarian cancer; Preference-sensitive decisions; Preventive options.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Six-step work process for the development of the DAs for women with BRCA1 or BRCA2 mutations. BRCA1/2 BReast CAncer gene 1 and 2, DAs decision aids, GC-HBOC German consortium of hereditary breast and ovarian cancer
Fig. 2
Fig. 2
Results of the systematic literature review to identify available DAs for women with BRCA1/2 mutations based on the PRISMA statement [42]; as of 6 December 2016. DAs: decision aids; Search strategy: (BRCA1 OR BRCA2 OR BRCA1/2 OR BRCA) AND (decision making OR decision aid OR decision support tool OR decision support technique OR decision support techniques)
See this image and copyright information in PMC

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