Financial Hardship among Patients with Acute Respiratory Failure and their Family Member Caregivers: Understanding the Impact on Patient- and Family- Centered Outcomes

项目摘要/摘要：适用于许多重病患者，例如那些有潜在生命限制的患者 慢性疾病，健康状况恶化通常会导致急性呼吸衰竭(ARF)，这是一种常见的危重疾病 与长期残疾和高死亡风险相关的疾病。危重病住院治疗是 资源密集和昂贵，并与沉重的家庭照顾者负担相关。因此，这些 患者及其家庭照顾者特别容易受到严重经济困难的影响。我们有 以前的研究表明，经济困难是ARF患者及其家人的主要压力来源 会员。重要的是，它是持续性的，出院后恶化，很可能是一个重要的 在这一人群中，心理痛苦和较差的生活质量的中介，但很少有研究试图 随着时间的推移，在以患者和家庭为中心的结果的背景下，解决经济困难的作用。 经济困难包括物质(例如，自付费用、失业)、心理上的 (例如，忧郁感)和行为方面(例如应对机制)。尽管经济困难已经 在门诊癌症患者中被确定为一个重要的和可修改的问题，几乎没有工作被 对ARF患者及其家人进行了治疗。为了制定针对具体情况的干预措施，很可能 为了有效地满足这些患者及其家属照顾者的独特需求，我们需要 了解谁在危重疾病期间和之后出现经济困难的风险最高，哪些 这些风险因素是可以改变的，经济困难对以患者和家庭为中心的结果的影响。 我们将通过使用多种方法来解决这一知识差距，以促进我们的理解 对患有急性肾功能衰竭的重病成年人及其家庭照顾者来说，他们的经济困难程度很高。在目标1中，我们将确定 患有ARF的患者和家庭照顾者通过检查有最高风险的后续经济困难 既有识别风险人群的不可修改的基线特征，也有可能成为 注重针对具体情况的干预措施。在目标2中，我们将在金融和金融之间建立重要联系 困难和以病人和家庭为中心的结果(心理困扰、与健康有关的生活质量和 目标一致的护理)随着时间的推移，一些尚未为ARF患者及其家人做的事情，但 是制定干预措施的必要的下一步，这种干预措施将成功地扰乱 危重疾病后经济困难的后果。在目标3中，我们将使用定性的方法来探索 物质困难的驱动因素及影响心理反应和应对行为的因素 关键利益相关者的视角。我们的多学科团队在评估患者方面拥有丰富的经验 以家庭为中心的结果，执行基于电子健康记录的数据收集，并进行 定性研究。我们的发现将为开发旨在 减轻ARF患者、家庭照顾者和医疗保健系统的经济困难负担。

PROJECT SUMMARY/ABSTRACT: For many seriously ill patients, such as those with underlying life-limiting chronic conditions, deterioration in health often results in acute respiratory failure (ARF), a common critical illness that is associated with prolonged disability and high risk of death. Critical illness hospitalizations are resource intensive and expensive, and associated with significant family caregiver burden. As a result, these patients and their family caregivers are particularly vulnerable to significant financial hardship. We have previously shown that financial hardship is a major source of stress for patients with ARF and their family members. Importantly, it is persistent, worsens after hospital discharge, and is likely to be an important mediator of psychological distress and poorer quality of life in this population, yet few studies have sought to address the role of financial hardship in the context of patient- and family-centered outcomes over time. Financial hardship encompasses material (e.g. out-of-pocket expenses, unemployment), psychological (e.g. feelings of distress), and behavioral aspects (e.g. coping mechanisms). Although financial hardship has been established as an important and modifiable problem among outpatients with cancer, little work has been done with patients with ARF and their families. In order to develop context-specific interventions that are likely to be effective in meeting the unique needs of these patients and their family caregivers, we need to understand who is at highest risk for developing financial hardship during and after critical illness, which of these risk factors are modifiable, and the effect of financial hardship on patient- and family-centered outcomes. We will address this knowledge gap by using a multiple methods approach to advance our understanding of financial hardship for seriously ill adults with ARF and their family caregivers. In Aim 1, we will identify patients with ARF and family caregivers who are at highest risk for subsequent financial hardship by examining both non-modifiable baseline characteristics that identify those at risk, and modifiable factors that may be the focus for context-specific interventions. In Aim 2, we will make the important connection between financial hardship and patient- and family-centered outcomes (psychological distress, health-related quality of life and goal-concordant care) over time, something which has not been done for patients with ARF and their family but is a necessary next step for the development of interventions that will successfully disrupt the long-term consequences of financial hardship following critical illness. In Aim 3, using qualitative methods, we will explore drivers of material hardship and factors that influence psychological responses and coping behaviors from the perspective of key stakeholders. Our multi-disciplinary team has significant experience assessing patient- and family-centered outcomes, performing electronic health records-based data collection, and conducting qualitative research. Our findings will lay the groundwork for the development of interventions designed to reduce the burden of financial hardship on patients with ARF, family caregivers, and the healthcare system.