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

急性呼吸衰竭患者及其家庭成员护理人员的经济困难：了解对以患者和家庭为中心的结果的影响

• 批准号: 10413457
• 负责人: Nita Khandelwal
• 金额: $ 72.22万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-08-01 至 2027-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10413457
• 关键词: Acute respiratory failure; Address; Adult; Age; Behavioral; Caregiver Burden; Caregivers; Caring; Characteristics; Chronic; Clinical; Coping Behavior; Critical Illness; Data Collection; Deterioration; Development; Electronic Health Record; Enrollment; Ethnic Origin; Evaluation; Family; Family Caregiver; Family Characteristics; Family member; Financial Hardship; Future; Goals; Health; Health Surveys; Health system; Healthcare Systems; Hospitalization; Hospitals; Individual; Intervention; Interview; Knowledge; Life; Longitudinal cohort study; Malignant Neoplasms; Measures; Mediation; Mediator of activation protein; Methods; Minority; Morbidity - disease rate; Oncology; Outcome; Outpatients; Participant; Patients; Perception; Policies; Population; Qualitative Methods; Qualitative Research; Quality of life; Race; Reporting; Resources; Risk; Risk Factors; Role; Sampling; Social support; Source; Stress; Structure; Surveys; Survivors; Time; Training; Underinsured; Unemployment; Uninsured Medical Expense; Vulnerable Populations; Work; base; care preference; cognitive disability; coping mechanism; disability risk; effective intervention; emotional distress; experience; financial literacy; health data; health literacy; health related quality of life; high risk; improved; loved ones; meetings; mortality risk; multidisciplinary; palliative; physically handicapped; psychologic; psychological distress; psychological outcomes; response; sociodemographics; therapy design; therapy development; trial design

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.

项目总结/摘要：对于许多重病患者，例如具有潜在生命限制的患者 在慢性疾病中，健康状况的恶化通常导致急性呼吸衰竭（ARF），这是一种常见的严重的 与长期残疾和高死亡风险相关的疾病。危重病住院治疗是 资源密集型和昂贵的，并与重大的家庭照顾者的负担。结果这些 病人及其家庭照顾者特别容易遭受严重的经济困难。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 成员重要的是，它是持续性的，在出院后仍然存在，并且可能是一个重要的 心理困扰和生活质量较差的中介，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（如自付费用、失业）、心理 (e.g.痛苦的感觉）和行为方面（例如应对机制）。虽然经济困难， 作为一个重要的和可改变的问题，门诊癌症患者，很少有工作已经 ARF患者和他们的家人。为了制定有针对性的干预措施， 为了有效满足这些患者及其家庭护理人员的独特需求，我们需要 了解谁是最高风险的发展经济困难期间和之后的重大疾病，其中 这些风险因素是可以改变的，经济困难对病人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 严重ARF患者及其家庭照顾者的经济困难。在目标1中，我们将确定 ARF患者和家庭照顾者，通过检查 识别风险的不可修改的基线特征，以及可能是风险的可修改因素。 注重针对具体情况的干预措施。在目标2中，我们将把金融和 困难和患者和家庭为中心的结果（心理困扰，健康相关的生活质量， 随着时间的推移，目标一致的护理），ARF患者及其家人还没有这样做， 是制定干预措施的必要下一步， 严重疾病后经济困难的后果。在目标3中，使用定性方法，我们将探索 物质困难的驱动因素和影响心理反应和应对行为的因素， 关键利益相关者的观点。我们的多学科团队具有评估患者的丰富经验， 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 质性研究我们的研究结果将为制定干预措施奠定基础， 减轻ARF患者、家庭照顾者和医疗保健系统的经济困难负担。