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: 10589141
• 负责人: Nils Henninger
• 金额: $ 20.56万
• 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 2024-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10589141
• 关键词: Acute Brain Injuries; Address; Admission activity; Adult; Advance Care Planning; Affect; American; Attention; Brain Injuries; 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 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; Suggestion; Survivors; Tablets; Technology; Telephone; Testing; Text; Training; Traumatic Brain Injury; Visit; Vulnerable Populations; Withdrawal; Work; care providers; clinical care; clinically relevant; cognitive load; cost; design; digital; digital decision aid; digital platform; disability; empowerment; evidence base; 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.

项目概要/摘要 美国每 30 秒就有一名成年人在脑外伤后遭受严重急性脑损伤 (SABI)， 大面积缺血性中风或脑出血，导致 200,000 人死亡，超过 900,000 名幸存者 每年，代理决策者都面临着艰难的“护理目标”决策。 监护病房 (ICU) 继续或撤回生命支持，同时考虑患者的长期预后。 护理决策目标信息不灵通和预后沟通不畅的风险尤其高 SABI 患者可能会因过早做出决定而导致死亡 如果继续治疗，可能会存活下来并获得良好的结果，或者相反，可以延长生命 患有严重的身体和认知功能障碍，这是患者不会选择的。 寻求制定务实的、可扩展的、基于概念的干预措施，以克服持续存在的问题 我们的长期目标是改善 ICU 中 SABI 患者代理人的高风险决策。 通过加强临床医生与家庭的沟通和赋权，为神经重症监护病房的 SABI 患者提供临床护理 代理人做出符合患者价值观的更明智的决定 为了实现我们的目标，我们将。 开发一种基于网络和移动/平板电脑的干预措施，供代理人和民兵使用（此 R21），然后在 多中心、随机试验干预对患者结果的影响、替代决策的质量 家庭的心理结果和医疗保健利用（随后的 R01）。 我们为危重 SABI 家庭开发了一种高度可用且可接受的、量身定制的纸质决策辅助工具 现在，我们计划利用更便携、更便捷的数字平台来扩大该工具的用途。 当地理位置遥远或不允许访问 ICU 时（如在住院期间），可在家庭成员之间共享 COVID-19 大流行），并允许整合视频以覆盖文化程度较低的群体。 帮助家庭做好代理角色的准备，并与忠诚者进行讨论，为他们提供平衡的信息； 家属的预后和所有可用的治疗方案提供有关患者的定制信息； 在家庭会议之前与新教徒进行家庭交流；并作为新教徒在家庭会议中的沟通指南； 该项目的具体目标是 1) 制定适应性、用户友好的数字决策。 通过应用用户体验设计和眼动追踪来帮助和沟通（DA+C）工具；2）评估可用性和 新 DA+C 工具的可接受性；3) 在 SABI 高风险患者的代理人中进行试点研究 死亡和残疾评估 DA+C 工具在 ICU 中的可行性并探讨其对关键要素的影响 该研究将产生重大影响，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措施对患者及其家人的影响所需的关键初步数据 拟议的研究通过应用用户体验而具有创新性。 这项工作在我们手中是可能的，因为我们拥有所需的专业知识。 成功使用了此处提出的所有方法，并获得了所有相关临床服务的支持。

项目成果

Prevalence and predictors of shared decision-making in goals-of-care clinician-family meetings for critically ill neurologic patients: a multi-center mixed-methods study.

危重神经系统患者护理目标临床医生家庭会议中共同决策的患病率和预测因素：一项多中心混合方法研究。

• 发表时间: 2023-10-21
• 作者: Fleming, Victoria;Prasad, Abhinav;Ge, Connie;Crawford, Sybil;Meraj, Shazeb;Hough, Catherine L;Lo, Bernard;Carson, Shannon S;Steingrub, Jay;White, Douglas B;Muehlschlegel, Susanne
• 通讯作者: Muehlschlegel, Susanne

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-care and Family/Surrogate Decision-Maker Data.

意识障碍的通用数据元素：护理目标和家庭/代理决策者数据工作组的建议。

• 发表时间: 2023-06-26
• 作者: Jaffa, Matthew N;Kirsch, Hannah L;Creutzfeldt, Claire J;Guanci, Mary;Hwang, David Y;LeTavec, Darlene;Mahanes, Dea;Steinberg, Alexis;Natarajan, Girija;Zahuranec, Darin B;Muehlschlegel, Susanne
• 通讯作者: Muehlschlegel, Susanne

Prognostic Language in Critical Neurologic Illness: A Multicenter Mixed-Methods Study.

危重神经系统疾病的预后语言：多中心混合方法研究。

• 发表时间: 2023-08-01
• 影响因子: 9.9
• 作者: Goss, Adeline;Ge, Connie;Crawford, Sybil;Goostrey, Kelsey;Buddadhumaruk, Praewpannanrai;Hough, Catherine L;Lo, Bernard;Carson, Shannon;Steingrub, Jay;White, Douglas B;Muehlschlegel, Susanne
• 通讯作者: Muehlschlegel, Susanne