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首页> 外文期刊>Journal of Personalized Medicine >Patient and Provider Perspectives on a Decision Aid for Familial Hypercholesterolemia
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Patient and Provider Perspectives on a Decision Aid for Familial Hypercholesterolemia

机译：家族性高胆固醇血症决策帮助的患者和提供者观点

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Familial Hypercholesterolemia (FH) is an inherited disorder associated with increased cardiovascular risk that requires patients to make multiple impactful decisions regarding the management of their condition. Patient decision aids (PDAs) can facilitate shared decision-making (SDM) and enable patients to make choices that are concordant with their goals and values. To inform the development of a PDA for patients with FH, we employed a qualitative inductive approach and focus group discussions with patients, physicians, and genetic counselors. We explored and analyzed the perceptions and understanding of these stakeholders related to a PDA for FH and identified important concepts to include in the PDA. Categories emerging from focus group discussions included: (a) perceptions of a PDA related to FH; (b) discussion about the content of a PDA related to FH; and (c) SDM. In general, stakeholders were in favor of developing tools which can inform and individualize discussion about genetic testing and treatment options for FH. Physicians valued a tool that facilitates knowledge transfer to FH patients. Patients desired a tool to help them understand the genetic aspects of and treatment options related to FH. Genetic counselors emphasized the inclusion of visual aids to support discussion with patients. Potential barriers to and facilitators of PDA implementation were identified. The input of various stakeholders will inform the development of a prototype tool that will be iteratively tested before implementation in the clinical setting.
机译：家族性高胆固醇血症（FH）是一种与心血管疾病风险增加相关的遗传性疾病，需要患者就疾病的治疗做出多项有影响的决定。患者决策辅助器（PDA）可以促进共享决策（SDM），并使患者能够做出与其目标和价值观相符的选择。为了为FH患者开发PDA提供信息，我们采用了定性归纳方法，并与患者，医生和遗传咨询师进行了焦点小组讨论。我们探索并分析了与FH PDA相关的这些利益相关者的看法和理解，并确定了要包含在PDA中的重要概念。焦点小组讨论中出现的类别包括：（a）对与FH相关的PDA的看法; （b）讨论与FH相关的PDA的内容; （c）SDM。总体而言，利益相关者赞成开发工具，这些工具可以为有关FH的基因检测和治疗选择提供信息并使其个性化。医师重视一种有助于将知识转移至FH患者的工具。患者需要一种工具来帮助他们了解FH的遗传学方面和与之相关的治疗选择。遗传咨询师强调包括视觉辅助工具以支持与患者的讨论。确定了PDA实施的潜在障碍和促进者。各种利益相关者的意见将为原型工具的开发提供信息，该工具将在临床环境中实施之前进行迭代测试。

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