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Overview

Patients with serious illnesses, like chronic obstructive pulmonary disease (COPD), often face difficult decisions about their care. Their beliefs about future health play a crucial role in these decisions. However, many patients have inaccurate expectations, leading to care choices that may not align with their true values. This is commonly known as goal-discordant care.

COPD is an incurable lung disease that predominantly affects older adults. It is a leading cause of death worldwide. Those with COPD and their caregivers frequently face a high burden of symptoms, mood disorders, and challenges in coping. Despite this, many do not always make use of advance care planning and palliative treatments. Existing evidence has shown that some patients COPD might have unrealistic health expectations and our early work has revealed that being overly optimistic might lead to worse quality of life over time.

The main goal of this project is to promote the well-being of patients living with COPD by ensuring their care matches their values. We are applying novel ideas from behavioral theories of decision-making and using new research methods to address the common problem of goal-discordant care. The study will recruit 420 patients with severe COPD and their caregivers from Wake Forest Baptist Health, Geisinger Health System, and the University of Pennsylvania Health System. These systems serve diverse communities, including those where COPD is especially burdensome, such as rural and Black communities.

Our research aims are to:
(1) Identify the characteristics in patients and caregivers linked with inaccurate health expectations.
(2) Study the relationship between accurate health expectations and overall well-being.
(3) Understand how the way clinicians communicate might shape these expectations.

This project will use state-of-the-art methods to test a new conceptual model that will provide deeper insights into how we can promote shared decision-making. This work will identify key targets for interventions that assist patients with serious illness in managing their expectations and choices.

Partnering Health Systems

Wake Forest Baptist Health
Geisinger Health System

Sponsors

National Heart, Lung, and Blood Institute (NHLBI)