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

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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.