Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease with no known cure, affects approximately 128,000 individuals in the U.S. annually. Average survival for patients with this disease is less than four years and, despite fatal outcomes, patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses.
Although transplantation is an effective therapy, less than 20 percent of patients with IPF receive a lung transplant. Based on feedback from patients and caregivers, researchers at the University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC and Pitt School of Medicine have begun a clinical trial of an early palliative care intervention known as SUPPORT. This stands for symptom management, understanding the disease, pulmonary rehabilitation, palliative care, oxygen therapy, research considerations and transplantation.
“Patients with IPF and other advanced lung diseases commonly are not referred to palliative care until very late in their disease, if they are referred at all,” said Dr. Kathleen Lindell, executive director of SUPPORT. “The goal of this program is to address this gap in care, educate patients on the resources available to them and ensure they understand how to best maintain their quality of life soon after diagnosis.”
Researchers predict SUPPORT will reduce stress and symptom burden while improving quality of life and advance care planning for patients diagnosed with IPF. Since March of 2017, Lindell and her team have recruited 35 IPF patients and their caregivers, and randomized them to receive either the SUPPORT intervention over the course of three visits from a trained nurse interventionist, or usual care. Those assigned to usual care will receive the intervention at the completion of their study. Researchers will look for impact of the intervention on stress, symptom burden, quality of life and completion of advance care planning as compared to care as usual.
“By increasing knowledge of the disease, teaching self-management skills and facilitating end-of-life preparedness, our goal is to address a critical gap in the care of IPF patients and caregivers,” Lindell said.
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