University of Pittsburgh, School of Medicine, Department of Medicine, Division of General Internal Medicine, 1218 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15261, United States of America.
University of Pittsburgh, School of Medicine, Department of Critical Care Medicine, Clinical Research, Investigation, and Systems Modeling of Acute Illness Center, Program on Ethics and Decision Making, 600 Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15213, United States of America.
J Crit Care. 2020 Apr;56:132-139. doi: 10.1016/j.jcrc.2019.12.002. Epub 2019 Dec 6.
Although family members of incapacitated, critically ill patients often struggle in the role of surrogate decision maker, there are no low-cost, easily-scaled interventions to address this problem.
To develop and pilot-test the Family Support Tool, an interactive, web-based tool to help individuals navigate the complexities of surrogate decision making in ICUs.
We used a mixed methods, user-centered process to create the Family Support Tool, including: 1) creation of a preliminary design by an expert panel; 2) engagement of a key stakeholder panel to iteratively refine the preliminary design; 3) user testing of a low-fidelity prototype of the tool by 6 former ICU surrogates; 4) creation of a web-based prototype; and 5) user testing of the web-based prototype with 14 surrogates and ICU physicians, including semi-structured interviews and quantitative measurement of usability, acceptability, and perceived effectiveness.
The initial design contained a collection of videos and exercises designed to help individuals understand the surrogate's role and think through the patient's values and preferences. Based on family stakeholders' feedback about the emotional overwhelm they experience early in an ICU stay, we redesigned the tool to be viewed in sections, with the first section focused on decreasing surrogates' emotional distress, and later sections focused on helping surrogates prepare for family meetings. Surrogates actively making decisions in the ICU judged the final tool to be highly usable (mean summary score 83.5, correlating to 95th percentile when normalized to devices of its type), acceptable (mean 4.2 +/- 0.5 out of 5), and effective (mean 4.3 +/- 0.6 out of 5). All surrogates reported the tool helped them consider goals of care and all indicated they would recommend the tool to a friend.
We successfully developed a web-based tool to help individuals navigate the complexities of surrogate decision making in ICUs that has high potential for scalability. Surrogates judged the tool to be usable, acceptable, and effective. These data support proceeding to test the tool in a pilot randomized clinical trial.
尽管丧失能力、病重的患者的家属在担任代理人决策方面经常感到困难，但目前尚无低成本、易于扩展的干预措施来解决这一问题。
开发和试点测试家庭支持工具，这是一种交互式、基于网络的工具，旨在帮助个人在 ICU 中应对代理决策的复杂性。
我们使用混合方法、以用户为中心的过程来创建家庭支持工具，包括：1）由专家小组创建初步设计；2）让关键利益相关者小组参与，对初步设计进行迭代改进；3）让 6 名前 ICU 代理人对工具的低保真原型进行用户测试；4）创建基于网络的原型；5）让 14 名代理人和 ICU 医生对基于网络的原型进行用户测试，包括半结构化访谈和对可用性、可接受性和感知效果的定量测量。
初始设计包含一系列视频和练习，旨在帮助个人了解代理人的角色，并思考患者的价值观和偏好。根据家庭利益相关者对 ICU 住院早期经历的情感困扰的反馈，我们重新设计了该工具，使其可以分节查看，第一节重点是减轻代理人的情绪困扰，后面的章节则侧重于帮助代理人为家庭会议做准备。在 ICU 积极做出决策的代理人认为最终工具的可用性非常高（平均综合得分为 83.5，归一化为同类设备的 95%分位数），可接受性（平均得分为 4.2 +/- 0.5 分，满分 5 分）和有效性（平均得分为 4.3 +/- 0.6 分，满分 5 分）。所有代理人都表示该工具帮助他们考虑了护理目标，并且都表示会向朋友推荐该工具。
我们成功开发了一种基于网络的工具，用于帮助个人在 ICU 中应对代理决策的复杂性，具有很高的扩展潜力。代理人认为该工具具有可用性、可接受性和有效性。这些数据支持进行试点随机临床试验来测试该工具。
