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

改善严重急性脑损伤患者的护理：为神经重症监护病房的临床医生和家属提供基于网络/移动/平板电脑的通信和决策支持工具

• 批准号: 10353628
• 负责人: Susanne Muehlschlegel
• 金额: $ 25.58万
• 依托单位: UNIV OF MASSACHUSETTS MED SCH WORCESTER
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-03-09 至 2023-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10353628
• 关键词: Acute Brain Injuries; Address; Adult; Advance Care Planning; Affect; American; Attention; Brain hemorrhage; COVID-19 pandemic; Caring; Cerebral hemisphere hemorrhage; Cessation of life; Clinical; Clinical Services; Communication; Communication Tools; Consultations; Critical Illness; Data; Decision Aid; Decision Making; Elements; Evaluation; Face; Family; Family health status; Family member; Feedback; Goals; Health system; Impaired cognition; Intensive Care Units; Internet; Intervention; Intervention Trial; Interview; Intuition; Ischemic Stroke; Letters; Life; Life Support Care; Measures; Medical; Methods; Modification; Multicenter Trials; Neurologic; Outcome; Palliative Care; Paper; Patient Care; Patient-Focused Outcomes; Patients; Perception; Pilot Projects; Preparation; Process; Professional counselor; Prognosis; Public Health; Questionnaires; Research; Research Personnel; Role; Shock; Survivors; Tablets; Technology; Telephone; Testing; Text; Time; Training; Traumatic Brain Injury; Visit; Vulnerable Populations; Withdrawal; Work; base; care providers; clinical care; clinically relevant; cognitive load; cost; design; digital; disability; empowered; expectation; experience; family support; geographically distant; group intervention; health care service utilization; high risk; improved; information display; innovation; literacy; meetings; mortality risk; patient prognosis; pilot test; portability; preference; premature; prevent; primary outcome; psychological distress; psychological outcomes; psychological symptom; public health relevance; randomized trial; recruit; screening; shared decision making; support tools; surrogate decision maker; surrogate decision making; tool; treatment as usual; usability; user centered design; user-friendly; visual tracking

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.

项目总结/摘要 在美国，每30秒就有一名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内出血，导致20万人死亡，超过90万人幸存， 每年残疾。每一天，代理决策者都面临着艰难的“护理目标”决定， 在考虑患者的长期预后的同时，监护病房（ICU）继续或撤回生命支持。的 护理决策的不知情目标和对预后的误解的风险特别高， SABI患者;有可能过早决定导致患者死亡， 如果继续治疗，或相反，延长生命， 患有严重的身体和认知功能障碍，这是病人不会选择的。在本提案中，我们 寻求制定一个务实的，可扩展的，概念性的干预措施，以克服持续存在的问题， ICU中SABI患者的代理人的高风险决策。我们的长远目标是改善 通过加强临床医生-家属沟通和授权，对神经ICU中的SABI患者进行临床护理 代理人做出更明智的决定与患者的价值观一致。为了实现我们的目标，我们将 开发基于网络和移动的/平板电脑的干预措施，供代理人和临床医生使用（本R21），然后在 多中心随机试验，干预对患者结局的影响，替代决定的质量- 决策、家庭心理结果和卫生保健利用（随后的R 01）。在我们之前的研究中 我们为重症SABI家庭开发了一种高度可用和可接受的、量身定制的纸质决策辅助工具 患者现在，我们计划通过利用数字平台来扩大该工具的使用范围，该平台更具便携性， 当地理位置遥远或不允许访问ICU时，可在家庭成员之间共享（如在 新冠肺炎疫情），并允许整合视频以覆盖识字率较低的群体。我们提出了一种工具， 准备家庭为他们的代理人的作用和讨论与临床医生;提供平衡的信息， 家庭的预后和所有可用的治疗方案;提供有关患者的定制信息， 在家庭会议之前，家庭与临床医生沟通;并作为临床医生的沟通指南， 临床医生家庭会议该项目的具体目标是：1）开发一个自适应的，用户友好的数字决策 通过应用用户体验设计和眼动跟踪，帮助和沟通（DA+C）工具; 2）评估可用性， 新DA+C工具的可接受性; 3）在SABI患者的高风险替代者中进行试点研究， 评估DA+C工具在ICU中的可行性，并探索其对死亡和残疾的关键因素的影响。 决策质量。这项研究将产生很大的影响，因为它将产生一个严格制定的干预措施， 进行多中心试验以评估干预措施对患者、家庭、 和卫生系统的成果。该研究通过用户体验的应用是创新的 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， 成功地使用了这里提出的所有方法，并获得了所有相关临床服务的认可。