Kautz-Freimuth, Sibylle, Redaelli, Marcus ORCID: 0000-0001-8830-1999, Rhiem, Kerstin, Vodermaier, Andrea, Krassuski, Lisa, Nicolai, Kathrin, Schnepper, Miriam, Kuboth, Violetta, Dick, Julia, Vennedey, Vera, Wiedemann, Regina, Schmutzler, Rita and Stock, Stephanie (2021). Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making. BMC Med. Inform. Decis. Mak., 21 (1). LONDON: BMC. ISSN 1472-6947

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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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Kautz-Freimuth, SibylleUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Redaelli, MarcusUNSPECIFIEDorcid.org/0000-0001-8830-1999UNSPECIFIED
Rhiem, KerstinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vodermaier, AndreaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Krassuski, LisaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Nicolai, KathrinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schnepper, MiriamUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kuboth, ViolettaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Dick, JuliaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vennedey, VeraUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wiedemann, ReginaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schmutzler, RitaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Stock, StephanieUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-577097
DOI: 10.1186/s12911-021-01528-4
Journal or Publication Title: BMC Med. Inform. Decis. Mak.
Volume: 21
Number: 1
Date: 2021
Publisher: BMC
Place of Publication: LONDON
ISSN: 1472-6947
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
CONTRALATERAL BREAST-CANCER; OVARIAN-CANCER; RANDOMIZED-TRIAL; RISK; PATIENT; WOMEN; MASTECTOMY; FRAMEWORK; FAMILIES; CRITERIAMultiple languages
Medical InformaticsMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/57709

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