Developing a Web and Tablet based Tool to Improve Communication and Shared Decision Making between Clinicians and Surrogates in ICUs

 美国三十年的研究表明，垂死的美国人经常在痛苦中度过最后的日子，并接受他们不会选择的治疗。五分之一的成年人死亡发生在重症监护室（ICU）出院后不久，在那里，临床医生与家人的沟通和临终关怀存在有据可查的问题。这些缺陷与信息不充分的治疗决定，患者代理人的持久心理困扰以及在生命结束时昂贵，繁重的治疗的高利用率有关。 不幸的是，没有实际的、可推广的干预措施被证明能有效缓解这三个公共卫生问题。在本申请中，我们建议通过开发基于网络和平板电脑的工具来解决这一差距，以加强ICU中的沟通和共享决策，然后在100名患者中进行试点RCT，评估干预措施对决策质量关键要素的影响。在准备这项申请时，我们与代理人和临床医生进行了深入的访谈，以评估基于网络和平板电脑的工具的可接受性，这揭示了对干预的广泛支持，以及有价值的设计建议：该工具应在多个时间点在线访问，它应该被设计为加强而不是取代临床医生与家庭的沟通。 在目标1中，我们将让代理人、临床医生和专家参与以用户为中心的设计的高度迭代过程，以开发一种可用、可访问且对代理人造成低认知负荷的工具。在目标2中，我们将在晚期危重病患者和重症监护医生和护士的代理人中对原型工具进行详细的可用性和可接受性评估。在目标3中，我们进行了一项试点随机对照试验，使用经过验证的工具来评估干预措施对决策质量和以患者为中心的护理决策的关键要素的影响。我们还将完成收集患者、家庭和医疗保健利用结果的长期结果数据的程序，这将是随后预期的多中心试验的主要结果指标。 如果成功，该项目将产生巨大影响，因为它将产生严格开发的干预措施和进行多中心试验所需的关键初步数据，以评估干预措施对患者和家庭结局的影响。该工具有可能克服每年影响60多万美国人死于ICU及其家人的重大公共卫生问题。该提案具有创新性，因为它将产生一种新颖的工具，挑战ICU中如何提供决策支持的现有范式。这项工作在我们手中是可行的，因为我们的研究者团队在ICU中成功进行试验的记录已经得到证实，成功使用了本申请中提出的所有方法，并获得了临床研究中心的参与。

 DESCRIPTION (provided by applicant): Three decades of research in the United States indicates that Americans who are dying often spend their final days in pain and receiving treatments they would not choose. One in five deaths among adults occurs in or shortly after discharge from an intensive care unit (ICU), where there are well-documented problems with clinician-family communication and end-of-life care. These deficiencies are associated with poorly informed treatment decisions, lasting psychological distress among patients' surrogates, and high utilization of expensive, burdensome treatments at the end of life. Unfortunately, there are no practical, generalizable interventions proven effective in mitigating these three public health problems. In this application, we propose to address this gap by developing a web and tablet-based tool to enhance communication and shared decision making in ICUs, then conducting a pilot RCT among 100 patients assessing the interventions' impact on key elements of decision making quality. In preparation for this application, we conducted in-depth interviews with surrogates and clinicians to assess the acceptability of a web and tablet-based tool, which revealed broad support for the intervention, as well as valuable design suggestions: the tool should be accessible on-line at multiple time-points, and it should be designed to enhance rather than replace clinician-family communication. In Aim 1, We will engage surrogates, clinicians, and experts in a highly iterative process of user- centered design to develop a tool that is usable, accessible, and poses low cognitive load for surrogates. In Aim 2, we will conduct detailed usability and acceptability evaluations of the prototype tool among surrogates of patients with advanced critical illness and critical care physicians and nurses. In Aim 3, we conduct a pilot RCT, using validated instruments to assess the intervention's impact on key elements of decision quality and the patient-centeredness of care decisions. We will also finalize procedures to collect long-term outcome data on patient, family, and health care utilization outcomes, which will be the main outcome measures of the anticipated multi-center trial that will follow. This project will have high impact if successful because it will yield a rigorously developed intervention and crucial preliminary data needed to conduct a multi-center trial to assess the interventions impact on patient and family outcomes. The tool has the potential to overcome major public health problems that affect the more than 600,000 Americans annually who die in ICUs and their family members. This proposal is innovative because it will produce a novel tool that challenges the existing paradigm of how decision support is provided in ICUs. The work is feasible in our hands because our team of established investigators has a proven record of success conducting trials in ICUs, have successfully used all methods proposed in this application, and have obtained buy-in for participation from the clinical sites.