Abstract：
In clinical medicine, shared decision making (SDM) is a well-recognized strategy to enhance engagement of both patients and clinicians in medical decisions. The success of liver-directed gene therapy (GT) to transform severe congenital haemophilia A (HA) from an incurable to a curable disease has launched a shift beyond current standards of treatment. However, GT acceptance remains low in the community of HA persons. We argue for both persons with haemophilia (PWH) and specialists in HA care including clinicians, as needing SDM-oriented educational programs devoted to GT. Here, we provide an ad hoc outline to implement education to SDM and tailor clinician information on GT to individual PWHs. Based on routine key components of SDM: patient priorities; recommendations based on individual risk reduction; adverse effects; drug-drug interactions; alternatives to GT; and ongoing re-assessment of the objectives as risk factors (and individual priorities) change, this approach is finalized to exploit efficacious communication.
摘要：
在临床医学中,共享决策（SDM）是一种公认的策略，可以增强患者和临床医生在医疗决策中的参与度。肝脏定向基因治疗（GT）成功地将严重的先天性血友病A（HA）从无法治愈的疾病转变为可治愈的疾病，已经开始了超越当前治疗标准的转变。然而,在HA人群中，GT的接受度仍然很低。我们主张血友病（PWH）患者和包括临床医生在内的HA护理专家，因为需要致力于GT的面向SDM的教育计划。这里,我们提供了一个临时大纲，以实施对SDM的教育，并为个人PWH定制GT的临床医生信息。基于SDM的常规关键组成部分：患者优先事项；基于个人风险降低的建议；不良反应；药物-药物相互作用；GT的替代方案；以及随着风险因素（和个人优先事项）的变化对目标的持续重新评估。这种方法是为了利用有效的沟通而最终确定的。
