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: 10596649
• 负责人: Claire Johanna Creutzfeldt
• 金额: $ 59.96万
• 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/10596649
• 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; Dimensions; Discipline of Nursing; Disease; Distress; Emotional; Enrollment; Exclusion; Face; Family; Family Caregiver; Family member; Frequencies; Future; Goals; Grief reaction; Health system; Healthcare Systems; Heart Arrest; Home; Hospice Care; Hospitals; Individual; Individual Adjustment; Intervention; Interview; Investigation; Ischemic Stroke; Knowledge; Life; Location; Malignant Neoplasms; Measures; Medical Care Team; Methods; Nature; Outcome; Outcome Assessment; Pain; Palliative Care; 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; Spirituality; Supportive care; Survivors; Symptoms; Time; Uncertainty; United States; Vulnerable Populations; Well in self; Work; acute care; care fragmentation; 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; primary care provider; 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.

项目总结/摘要 在美国，每3分钟就有一个人死于严重的急性血管性脑损伤（SABI）： 缺血性中风、脑内出血或心脏骤停。SABI占死亡人数的十分之一以上 这是全球范围内严重的长期残疾的主要原因。尽管SABI急性治疗的进展 改善了一些人获得良好结果的机会，这种情况继续对 许多是由于高死亡率、长期残疾、高症状负担、复杂的护理过渡和不断变化的 随着时间的推移，护理的目标。然而，由于大多数研究关注功能结局或死亡率的测量，证据- 随着时间的推移，特别是在最后几周， 生活，缺少。此外，SABI患者的家庭成员存在长期心理困扰的风险 以及由于替代决策、悲伤和复杂悲伤的负担而降低的生活质量。 与许多其他严重疾病相反，如癌症或痴呆症，其中死亡通常伴随着渐进性疾病， SABI后的功能下降、姑息治疗提供和严重疾病对话具有独特的挑战性 由于发病的突然性和预后的不确定性，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。初步研究发现 大量错过机会，以确定和解决症状，如疼痛或心理困扰，或 让家人为死亡的可能性做好准备。此外，医院的幸存者很少出院回家， 在护理设施、康复中心和医院中面临分散的护理。目前，有一个关键的 我们对SABI患者及其家属的症状负担的理解存在差距， 了解姑息治疗如何融入SABI管理。为了更好地理解如何重新- 想象一下护理提供模式，我们将进行一个多中心的前瞻性，纵向，混合方法的队列研究 对540名SABI患者及其家属进行的研究，以检查可改变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）确定轨道， SABI患者多维症状负担和死亡质量的决定因素， 干预措施的发展; 2）确定关键的医疗保健系统因素和患者相关的决定因素 与SABI患者家属的心理困扰有关; 3）为了更好地了解 病人和家庭照顾者的需求，确定护理差距，并探讨他们对潜在的护理和 姑息治疗干预措施，以解决整个SABI连续体未满足的需求，并进行深入访谈。结果 这项工作的一部分将使我们能够通过设计具体的、可定制的 护理和姑息治疗干预。我们发现的深度和广度将导致 为这一人群采取适当的干预措施，减少痛苦，提高生活质量， 为所有受严重急性脑损伤影响的人提供临终关怀。

项目成果

Goals-of-Care Conversations After Stroke Survival.

中风生存后的护理目标对话。

• DOI: 10.1161/strokeaha.123.046119
• 发表时间: 2024
• 期刊: Stroke
• 影响因子: 8.3
• 作者: Miles,NancyL;Abedini,NauzleyC;Harris,MarkH;Engelberg,RuthA;Kross,ErinK;Creutzfeldt,ClaireJ
• 通讯作者: Creutzfeldt,ClaireJ