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

项目摘要/摘要 在美国，每3分钟就有一人死于严重的急性脑血管损伤(Sabi)： 缺血性中风、脑出血或心脏骤停。萨比人占死亡人数的十分之一以上 在全球范围内，它是导致长期严重残疾的主要原因。萨比氏病急性处理的研究进展 已经提高了一些人获得好结果的机会，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、复杂的护理过渡和变化 随时间推移的护理目标。然而，由于大多数研究都集中在衡量功能结果或死亡率上，有证据表明- 基于随着时间的推移有关更多全球多维症状的信息，特别是在 生命，是缺乏的。此外，萨比病患者的家属面临长期心理困扰的风险。 由于代孕决策、照顾和复杂悲痛的负担，生活质量降低。 与癌症或痴呆症等许多其他严重疾病形成对比的是，在这些疾病中，死亡通常伴随着渐进性的 Sabi后的功能下降、姑息治疗和严重疾病对话是独一无二的挑战 由于发病的突发性和重大的预后不确定性，包括康复的可能性。 姑息治疗专家很少参与这些患者的护理。初步研究已经确定 大量错失了识别和解决疼痛或心理困扰等症状的机会，或 让家人做好应对高死亡可能性的准备。此外，医院幸存者很少出院回家， 面临护理设施、康复中心和医院的零散护理。目前，有一个关键的 我们对萨比病患者及其家人以及我们的 了解姑息治疗是如何融入萨比管理的。为了更好地理解如何重新- 设想护理服务的提供模式，我们将进行多中心前瞻性、纵向、混合方法的队列 540例沙比症患者及其家属检测关键可改变医疗系统决定因素的研究 这可能是未来干预的目标。这项建议的目的是：1)确定轨迹和 多维症状负担和死亡质量的决定因素对Sabi患者的促进作用 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 与沙比病患者家属的心理困扰有关；以及3)更好地了解 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 姑息治疗干预，通过深入访谈，解决萨比河流域未得到满足的需求。结果 这项工作将使我们能够通过设计具体的、可定制的 护理和姑息治疗干预。我们发现的深度和广度将导致背景 对这一人群进行适当的干预，以减少痛苦，提高生活质量和质量 对所有受严重急性脑损伤影响的人进行临终关怀。

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.