1 Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
2 Usher Institute for Population Sciences, Edinburgh, UK.
Int J Stroke. 2017 Dec;12(9):920-922. doi: 10.1177/1747493017730746. Epub 2017 Sep 12.
People who are well may regard survival with disability as being worse than death. However, this is often not the case when those surviving with disability (e.g. stroke survivors) are asked the same question. Many routine treatments provided after an acute stroke (e.g. feeding via a tube) increase survival, but with disability. Therefore, clinicians need to support patients and families in making informed decisions about the use of these treatments, in a process termed shared decision making. This is challenging after acute stroke: there is prognostic uncertainty, patients are often too unwell to participate in decision making, and proxies may not know the patients' expressed wishes (i.e. values). Patients' values also change over time and in different situations. There is limited evidence on successful methods to facilitate this process. Changes targeted at components of shared decision making (e.g. decision aids to provide information and discussing patient values) increase patient satisfaction. How this influences decision making is unclear. Presumably, a "shared decision-making tool" that introduces effective changes at various stages in this process might be helpful after acute stroke. For example, by complementing professional judgement with predictions from prognostic models, clinicians could provide information that is more accurate. Decision aids that are personalized may be helpful. Further qualitative research can provide clinicians with a better understanding of patient values and factors influencing this at different time points after a stroke. The evaluation of this tool in its success to achieve outcomes consistent with patients' values may require more than one clinical trial.
健康的人可能认为残疾生存不如死亡。然而，当那些残疾幸存者（如中风幸存者）被问到同样的问题时，情况往往并非如此。许多急性中风后提供的常规治疗（例如通过管子进食）可以提高生存率，但伴随着残疾。因此，临床医生需要在共享决策制定过程中，支持患者和家属做出关于使用这些治疗方法的明智决策。这在急性中风后是具有挑战性的：存在预后不确定性，患者通常身体状况不佳，无法参与决策，而代理人可能不知道患者的表达意愿（即价值观）。患者的价值观也会随着时间和不同情况而变化。关于促进这一过程的成功方法的证据有限。针对共享决策制定各个组成部分（例如提供信息的决策辅助工具和讨论患者价值观）的变化会增加患者的满意度。这如何影响决策尚不清楚。推测，在急性中风后，一种“共享决策制定工具”可能会有所帮助，该工具在该过程的各个阶段引入有效的变化。例如，通过将预后模型的预测与专业判断相结合，临床医生可以提供更准确的信息。个性化的决策辅助工具可能会有所帮助。进一步的定性研究可以使临床医生更好地了解患者的价值观以及在中风后不同时间点影响这些价值观的因素。评估该工具在实现与患者价值观一致的结果方面的成功可能需要不止一项临床试验。
