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The University of Pennsylvania proudly serves as a secondary site for this study. This project is spearheaded by Dr. Nita Khandelwal’s team at the University of Washington. Many seriously ill patients, especially those with life-limiting chronic conditions, face a decline in health that leads to acute respiratory failure (ARF). This is a critical illness that comes with a high risk of long-lasting disability and death. Hospital stays for such critical illnesses are resource-heavy and costly, adding strain for patients and their families. Dr. Khandelwal’s early work has shown that financial hardship is a major stressor for patients with ARF and their families. This burden persists after hospital discharge, potentially leading to more distress and a reduction in their overall quality of life. Despite this, few studies have tried to address the role of financial hardship in the context of patient- and family-centered outcomes over time.

Financial hardship can be viewed in terms of its material (e.g., out-of-pocket costs, unemployment), psychological (e.g., feelings of distress), and behavioral aspects (e.g., coping mechanisms). While the financial struggles of other patient groups are documented, there is less known about the challenges faced by patients with ARF and their families. To create interventions tailored to patients and their families, we need to understand who is most at risk of financial hardship during and after critical illness, which risk factors are modifiable, and how financial strain affects patient- and family-outcomes.

To address this, our project will:
(1) Identify patients with ARF and family caregivers who are at highest risk for financial hardship. We will do this by looking at non-modifiable baseline characteristics, along with modifiable factors that can be addressed through tailored interventions.
(2) Connect financial hardship to patient- and family-centered outcomes (e.g., psychological distress, health-related quality of life and goal-concordant care) over time. This has not been extensively explored for patients with ARF and their families, but is crucial for developing effective interventions that target the long-term effects of financial hardship.
(3) Use interviews with key stakeholders, including clinicians, to explore the causes of financial stress and how families and patients respond and cope.

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.

Partnering Health Systems

University of Washington


National Heart, Lung, and Blood Institute (NHLBI)