Project Summary

Many patients with fibrotic interstitial lung disease or progressive lung fibrosis suffer from shortness of breath, cough and fatigue and become more frail or weak with poor quality of life. Over 200,000 people in the United States suffer from lung fibrosis, and in many cases significant symptoms and a low sense of well-being remain despite available medications for slowing lung function decline. 

Pulmonary rehabilitation (PR) is a form of controlled exercise shown in some research studies to improve a patient's quality of life through better exercise tolerance and decreased shortness of breath. It has not been used in real-world settings as often as desired or in the same manner as described in such research studies. The study team predicts that changing the way PR is provided and giving additional support through a health coach will lead to important changes for patients and their loved ones, i.e., improving their physical well-being and quality of life. 

This study will examine the potential benefits of a home-based PR program with health coaching by telephone compared to no PR (currently, the experience of most patients with lung fibrosis). All patients with lung fibrosis and related symptoms are eligible for screening and enrollment so long as they can safely participate in a mild-to-moderate level of exercise in their own homes. The study will randomize patients to receive the home-based PR program for 12 weeks or to a non-use waitlist control group. Those placed into the control group can enroll in the home-based PR program if they choose after finishing the control period and will receive the same study monitoring and measurements. 

Researchers hope to see measurable positive differences on questionnaires that assess a patient's self-reported respiratory-related quality of life and increases in the number of steps per day after completing the home-based PR program. Other changes the study team is interested in learning more about include a patient's own ability to manage their behaviors and plans for coping with their disease (self-management ability). Researchers are also interested in seeing how often patients have to visit with a doctor or receive additional medical care if they are in the program versus not. 

To understand how the program might be of most benefit to those who will use it, researchers invited individuals to join an advisory group, including patients with lung fibrosis and their caregivers, doctors who are not lung experts but may help the team understand why they may or may not decide to offer the program to their patients, experts in health coaching, experts in health monitoring technology, administrators who help doctors and other health providers make decisions about using the program, and representatives of nonprofit and advocacy organizations that support and speak on behalf of patients with lung fibrosis. They will all be part of the study planning and conduct and later help disseminate its findings.

Project Information

Teng Moua, M.D.
Mayo Clinic Rochester
$4,826,570

Key Dates

60 months
November 2023
2023

Tags

Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 15, 2024