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首页> 外文期刊>BMC Medical Informatics and Decision Making >Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making
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Development of decision aids for female BRCA1 and BRCA2 mutation carriers in Germany to support preference-sensitive decision-making

机译：制定德国女性BRCA1和BRCA2变异载体的决策辅助，以支持偏好敏感决策

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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. 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. 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). 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.
机译：具有致病性BRCA1和BRCA2突变的妇女具有高风险的乳腺癌和卵巢癌。考虑到预防性选择时，它们会面临困难的选择。本研究介绍了第一次决策援助的发展过程，以支持德国医疗保健系统中的这种复杂的决策过程。使用了基于国际患者决策援助标准的六步开发过程，包括对现有决策助剂的系统文献综述，局部医学文献综述，编制决策助剂，重点与BRCA1 / 2突变的妇女讨论，通过临床和自助专家和用户测试的内部和外部审查。所有评论都遵循迭代修订。没有现有的决策助剂可转移到德国环境。医学研究揭示了在没有癌症（Previvers）和（B）的历史中，患有BRCA1 / 2突变（a）的妇女的单独决策助剂是有必要为单侧乳腺癌（幸存者）的历史。焦点小组讨论确认了对目标群体决策助剂的高度批准。此外，预viver还要求更多有关减少风险的乳房手术的信息，减少卵巢和输卵管的危险清除，以及心理方面;幸存者尤其想要更多关于受影响的乳腺癌的更多信息（例如，生物参数，治疗和复发风险）。在结构化方法中，制定了两种针对性常规血液患者/幸存者的特异性DAS，以支持对风险适应的预防性选择的决策。这些患者导向的工具为德国现有的专业医疗保健提供了重要的补充。

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