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

BMC Medical Informatics and Decision Making

Violetta Kuboth¹  Julia Dick¹  Rita Schmutzler¹  Regina Wiedemann¹  Kerstin Rhiem¹  Kathrin Nicolai²  Lisa Krassuski²  Sibylle Kautz-Freimuth²  Vera Vennedey²  Marcus Redaèlli²  Stephanie Stock²  Miriam Schnepper²  Andrea Vodermaier³ 

[1] Centre for Familial Breast and Ovarian Cancer, Centre for Integrated Oncology (CIO), Faculty of Medicine, University of Cologne, University Hospital of Cologne, Kerpener Straße 62, 50937, Cologne, Germany;Institute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany;Institute for Health Economics and Clinical Epidemiology, The University Hospital of Cologne, Gleueler Straße 176-178, 50935, Cologne, Germany;School of Population and Public Health, The University of British Columbia, 2206 East Mall, C6T 1Z3, Vancouver, BC, Canada;

关键词: BRCA1;    BRCA2;    BRCA1/2;    Decision aids;    Development process;    Hereditary breast and ovarian cancer;    Preference-sensitive decisions;    Preventive options;   

DOI  :  10.1186/s12911-021-01528-4

来源: Springer

【 摘 要 】

BackgroundWomen 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.MethodsA 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.ResultsNo 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).ConclusionsIn 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.

【 授权许可】

CC BY