Hajizadeh Negin, Basile Melissa J, Kozikowski Andrzej, Akerman Meredith, Liberman Tara, McGinn Thomas, Diefenbach Michael A
Department of Medicine, Hofstra Northwell School of Medicine, Hofstra University, Hempstead, NY (NH, AK, TL, TM, MAD).
Feinstein Institute for Medical Research, Northwell Health, Manhasset, NY (MJB, MA).
Med Decis Making. 2017 Apr;37(3):216-229. doi: 10.1177/0272989X16683938. Epub 2017 Jan 6.
Patients with advanced-stage chronic obstructive pulmonary disease (COPD) may suffer severe respiratory exacerbations and need to decide between accepting life-sustaining treatments versus foregoing these treatments (choosing comfort care only). We designed the InformedTogether decision aid to inform this decision and describe results of a pilot study to assess usability focusing on participants' trust in the content of the decision aid, acceptability, recommendations for improvement, and emotional reactions to this emotionally laden decision.
Study participants ( N = 26) comprising clinicians, patients, and surrogates viewed the decision aid, completed usability tasks, and participated in interviews and focus groups assessing comprehension, trust, perception of bias, and perceived acceptability of InformedTogether. Mixed methods were used to analyze results.
Almost all participants understood the gist (general meaning) of InformedTogether. However, many lower literacy participants had difficulty answering the more detailed questions related to comprehension, especially when interpreting icon arrays, and many were not aware that they had misunderstood the information. Qualitative analysis showed a range of emotional reactions to the information. Participants with low verbatim comprehension frequently referenced lived experiences when answering knowledge questions, which we termed "alternative knowledge."
We found a range of emotional reactions to the information and frequent use of alternative knowledge frameworks for deriving meaning from the data. These observations led to insights into the impact of lived experiences on the uptake of biomedical information presented in decision aids. Communicating prognostic information could potentially be improved by eliciting alternative knowledge as a starting point to build communication, in particular for low literacy patients. Decision aids designed to facilitate shared decision making should elicit this knowledge and help clinicians tailor information accordingly.
晚期慢性阻塞性肺疾病（COPD）患者可能会遭受严重的呼吸加重发作，需要在接受维持生命的治疗与放弃这些治疗（仅选择舒适护理）之间做出决定。我们设计了“共同知情”决策辅助工具来为这一决策提供信息，并描述一项试点研究的结果，该研究旨在评估可用性，重点关注参与者对决策辅助工具内容的信任度、可接受性、改进建议以及对这一充满情感的决策的情绪反应。
研究参与者（N = 26）包括临床医生、患者和代理人，他们观看了决策辅助工具，完成了可用性任务，并参加了访谈和焦点小组，以评估对“共同知情”的理解、信任、偏差感知和感知可接受性。采用混合方法分析结果。
几乎所有参与者都理解了“共同知情”的要点（大致含义）。然而，许多文化程度较低的参与者在回答与理解相关的更详细问题时遇到困难，尤其是在解释图标阵列时，而且许多人并未意识到自己误解了信息。定性分析显示了对这些信息的一系列情绪反应。逐字理解能力较低的参与者在回答知识问题时经常提及生活经历，我们将其称为“替代性知识”。
我们发现了对这些信息的一系列情绪反应，以及频繁使用替代性知识框架从数据中获取意义的情况。这些观察结果使我们深入了解了生活经历对决策辅助工具中呈现的生物医学信息接受度的影响。通过引出替代性知识作为建立沟通的起点，特别是对于文化程度较低的患者，传达预后信息可能会得到改善。旨在促进共同决策的决策辅助工具应引出此类知识，并帮助临床医生相应地调整信息。
