Improving patient care in severe acute brain injury: a web/mobile/tablet-based communication and decision support tool for clinicians and families in the neuro-ICU

项目摘要/摘要 在美国，每30秒就有一个成年人在创伤性脑损伤后遭受严重的急性脑损伤(Sabi)， 大面积缺血性中风或脑出血，导致200,000人死亡，900,000名幸存者与 每年的残疾人数。每天，代孕决策者在重症监护室都面临着艰难的“护理目标”决策 监护病房(ICU)在考虑病人的长期预后的同时，继续或停止生命支持。这个 不了解护理决策的目标和关于预后的错误沟通的风险在 患有萨比氏病的患者；有可能过早做出决定，导致患者死亡 如果继续治疗，可能会存活下来，结果很好，或者相反，延长生命 患有严重的身体和认知功能障碍，这是患者不会选择的。在这项提案中，我们 寻求开发务实、可扩展、概念上有基础的干预措施，以克服持续存在的问题 ICU中萨比病患者代理人的高风险决策。我们的长期目标是改善 加强临床医生与家庭沟通和赋权对神经ICU沙比症患者的临床护理 代理人做出与患者价值观一致的更明智的决定。为了实现我们的目标，我们将 开发基于网络和移动/平板电脑的干预措施，供代理人和临床医生使用(此R21)，然后在 多中心随机试验干预对患者结局、代孕决策质量的影响 制作、家庭心理结果和卫生保健利用(随后的R01)。在我们之前的研究中 我们开发了一种高度可用和可接受的、量身定做的纸质决策辅助工具，适用于重症Sabi患者的家庭 病人。现在，我们计划通过利用数字平台来扩大该工具的使用范围，该平台更便携， 在地理上相距遥远或不允许访问ICU时(如在 新冠肺炎大流行)，并允许将视频整合到低识字率群体。我们提出了一个工具， 为家庭代孕和与临床医生的讨论做好准备；提供平衡的信息 家庭关于预后和所有可用的治疗选择；提供关于患者和 在家庭会议之前向临床医生传达信息；并为临床医生提供沟通指南 临床医生-家庭会议。该项目的具体目标是1)开发一种自适应的、用户友好的数字决策 应用用户体验设计和眼球跟踪的辅助和交流(DA C)工具；2)评估可用性和 新的DA C工具的可接受性；以及3)在萨比病高危患者的代理人中进行试点研究 评估DA C工具在ICU的可行性，并探讨其对以下关键因素的影响 决策质量。这项研究将产生很大的影响，因为它将产生严格制定的干预措施和 进行多中心试验以评估干预对患者和家属的影响所需的关键初步数据 和卫生系统的结果。通过用户体验的应用，提出的研究具有创新性 设计和眼动跟踪方法。这项工作在我们手中是可行的，因为我们有所需的专业知识，有 成功地使用了这里提出的所有方法，并从所有相关的临床服务中获得了认可。

Project Summary / Abstract Every 30 seconds an adult in the U.S. suffers a severe acute brain injury (SABI) after a traumatic brain injury, large ischemic stroke or intracerebral hemorrhage, resulting in 200,000 deaths and >900,000 survivors living with disability annually. Every day, surrogate decision makers face the difficult “goals of care” decision in intensive care units (ICUs) to continue or withdraw life support while considering the patient’s long-term prognosis. The stakes for ill-informed goals of care decisions and miscommunications about the prognosis are especially high in patients with SABI; there is the potential for a premature decision leading to the death of a patient who may potentially have survived with a good outcome had treatment been continued, or, conversely, prolongation of life with severe physical and cognitive dysfunction which the patient would not have chosen. In this proposal, we seek to develop a pragmatic, scalable, conceptually grounded intervention to overcome ongoing problems with high stakes decision-making by surrogates of patients with SABI in ICUs. Our long-term goal is to improve the clinical care for SABI patients in neuroICUs by enhancing clinician-family communication and empowering surrogates to make better informed decisions concordant with patient values. To achieve our goal, we will develop a web and mobile/tablet-based intervention for use by surrogates and clinicians (this R21), then test in a multicenter, randomized trial the intervention’s impact on patient outcomes, the quality of surrogate decision- making, families’ psychological outcomes, and health care utilization (subsequent R01). In our previous research we developed a highly usable and acceptable, tailored, paper-based decision aid for families of critically ill SABI patients. Now we plan to widen the tool’s use by leveraging a digital platform, which is more portable and shareable among family members when geographically distant or not allowed to visit the ICU (as during the COVID-19 pandemic) and allows integration of videos to reach lower-literacy groups. We propose a tool that prepares families for their surrogate role and discussions with clinicians; provides balanced information to families on prognosis and all available treatment options; provides tailored information about the patient and family to clinicians in advance of family meetings; and serves as a communication guide for clinicians in the clinician-family meeting. The project’s Specific Aims are to 1) develop an adaptive, user-friendly digital decision aid and communication (DA+C) tool by applying user experience design and eye tracking; 2) assess usability and acceptability of the new DA+C tool; and 3) conduct a pilot study in surrogates of SABI patients at high risk of death and disability to assess the DA+C tool’s feasibility in the ICU and explore its impact on key elements of decision making quality. The research will have high impact as it will yield a rigorously developed intervention and crucial preliminary data needed to conduct a multicenter trial to assess the intervention’s impact on patient, family and health-systems outcomes. The proposed research is innovative through application of user experience design and eye tracking methods. The work is feasible in our hands, as we have the expertise needed, have successfully used all methods proposed here and have obtained buy-in from all relevant clinical services.