Comprehensive Outcome Assessment after Severe Acute Brain Injury: Advanced Symptoms and End-of-Life Care Needs

严重急性脑损伤后的综合结果评估：晚期症状和临终护理需求

• 批准号: 10404565
• 负责人: Claire Johanna Creutzfeldt
• 金额: $ 60.01万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-12 至 2026-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10404565
• 关键词: Acute; Acute Brain Injuries; Address; Affect; Behavioral Symptoms; Care given by nurses; Caring; Cerebral hemisphere hemorrhage; Cerebrovascular Trauma; Cessation of life; Characteristics; Clinical; Cohort Studies; Collaborations; Communication; Complex; Decision Making; Dementia; Discipline of Nursing; Disease; Distress; Emotional; Enrollment; Face; Family; Family Caregiver; Family member; Frequencies; Future; Goals; Grief reaction; Health system; Healthcare Systems; Heart Arrest; Home; Hospice Care; Hospitals; Individual; Intervention; Interview; Investigation; Ischemic Brain Injury; Ischemic Stroke; Knowledge; Life; Location; Malignant Neoplasms; Measures; Medical Care Team; Methods; Nature; Outcome; Outcome Assessment; Pain; Palliative Care; Palliative Care Nursing; Pathway interactions; Patient Care; Patients; Pattern; Persons; Population; Population Intervention; Prevalence; Prospective cohort; Provider; Quality of life; Recovery; Rehabilitation Centers; Reporting; Research; Risk; Service delivery model; Services; Severity of illness; Specialist; Supportive care; Survivors; Symptoms; Time; Uncertainty; United States; Vulnerable Populations; Well in self; Work; acute care; base; care fragmentation; care providers; care systems; caregiver strain; caregiving; curative treatments; design; disability; end of life; end of life care; evidence base; functional decline; functional outcomes; hospice environment; improved; medical specialties; mortality; multidisciplinary; non-motor symptom; nursing intervention; palliative; prognostic; prospective; psychologic; psychological distress; psychological symptom; quality of death; routine care; sociodemographics; surrogate decision making; therapy development

PROJECT SUMMARY/ABSTRACT Every 3 minutes in the United States, a person dies after suffering a severe acute vascular brain injury (SABI): an ischemic stroke, intracerebral hemorrhage or cardiac arrest. SABI accounts for more than one in 10 deaths globally and is a leading cause of serious long-term disability. Though advances in acute management of SABI have improved the chance of good outcome for some, this condition continues to have a tremendous impact for many due to high mortality, long-term disability, high symptom burden, complex care transitions, and changing goals of care over time. Yet, as most studies focus on measures of functional outcome or mortality, evidence- based information about more global multidimensional symptoms over time, and especially in the last weeks of life, is lacking. In addition, family members of patients with SABI are at risk for long-term psychological distress and reduced quality of life due to the burdens of surrogate decision-making, caregiving, and complicated grief. In contrast to many other serious illnesses, such as cancer or dementia, where death often follows a progressive decline in function, palliative care provision and serious illness conversations after SABI are uniquely challenging due to the suddenness of onset and substantial prognostic uncertainty that includes the potential for recovery. Palliative care specialists are rarely involved in the care of these patients. Preliminary studies have identified substantial missed opportunities to identify and address symptoms such as pain or psychological distress, or to prepare families for the high likelihood of death. In addition, hospital survivors are rarely discharged home and face fragmented care across nursing facilities, rehabilitation centers and hospitals. Currently, there is a critical gap in our understanding of the symptom burden among SABI patients and their families, as well as our understanding of how palliative care is integrated into SABI management. To better understand how to re- imagine care delivery models, we will conduct a multi-center prospective, longitudinal, mixed-methods cohort study of 540 patients with SABI and their families to examine key modifiable healthcare system determinants that may be targets for future intervention. The aims of this proposal are: 1) To define the trajectory and determinants of multidimensional symptom burden and quality of dying among patients with SABI to facilitate intervention development; 2) To identify key healthcare system factors and patient-related determinants associated with psychological distress among family members of patients with SABI; and 3) To better understand patient and family caregiver needs, identify gaps in care, and explore their perspectives on potential nursing and palliative care interventions to address unmet needs across the SABI continuum with in-depth interviews. Results of this work will allow us to target deficiencies in our health system through the design of specific, tailorable nursing and palliative care interventions. The depth and breadth of our findings will lead to contextually appropriate interventions for this population that will reduce suffering and improve quality of life and the quality of end-of-life care for all individuals affected by severe acute brain injury.

项目概要/摘要 在美国，每 3 分钟就有一人因严重急性血管性脑损伤 (SABI) 死亡： 缺血性中风、脑出血或心脏骤停。 SABI 造成的死亡人数超过十分之一 在全球范围内，它是严重长期残疾的主要原因。尽管 SABI 的急性治疗取得了进展 提高了一些人获得良好结果的机会，但这种情况继续对某些人产生巨大影响 许多是由于高死亡率、长期残疾、高症状负担、复杂的护理转变和变化 随着时间的推移护理目标。然而，由于大多数研究侧重于功能结果或死亡率的衡量，证据- 随着时间的推移，特别是在最后几周，有关更多全球多维症状的信息 生活，缺乏。此外，SABI患者的家人面临长期心理困扰的风险 由于替代决策、照顾和复杂的悲伤的负担，生活质量下降。 与癌症或痴呆症等许多其他严重疾病相反，这些疾病通常会随着病情进展而死亡。 SABI 后功能下降、姑息治疗和严重疾病对话具有独特的挑战性 由于发病突然，预后存在很大的不确定性，包括恢复的可能性。 姑息治疗专家很少参与这些患者的护理。初步研究已确定 严重错失了识别和解决疼痛或心理困扰等症状的机会，或者 家人要为死亡的高可能性做好准备。此外，医院幸存者很少出院回家， 面临护理机构、康复中心和医院的分散护理。目前，有一个关键的 我们对 SABI 患者及其家人的症状负担的理解存在差距，以及我们的 了解如何将姑息治疗纳入 SABI 管理。为了更好地理解如何重新 想象护理服务模式，我们将进行多中心前瞻性、纵向、混合方法队列研究 对 540 名 SABI 患者及其家人进行的研究，旨在检查可修改的医疗保健系统的关键决定因素 这可能是未来干预的目标。该提案的目的是： 1）定义轨迹和 SABI 患者多维症状负担和死亡质量的决定因素，以促进 干预发展； 2) 确定关键的医疗保健系统因素和与患者相关的决定因素 与 SABI 患者家属的心理困扰有关； 3）为了更好地理解 患者和家庭护理人员的需求，找出护理方面的差距，并探讨他们对潜在护理和护理的看法 姑息治疗干预措施通过深入访谈来解决 SABI 连续体中未满足的需求。结果 这项工作将使我们能够通过设计具体的、可定制的方案来解决我们卫生系统的缺陷 护理和姑息治疗干预措施。我们研究结果的深度和广度将导致 对这一人群采取适当的干预措施，将减少痛苦并提高生活质量和质量 为所有受严重急性脑损伤影响的个人提供临终关怀。