Three Lakes Foundation and the American College of Chest Physicians (CHEST) recently announced their collaboration on a multiphase educational initiative aiming to reduce the time it takes to diagnose patients with Interstitial Lung Diseases (ILD).
Affecting around 400,000 people in the United States, ILDs are a group of diseases that cause lung inflammation and/or permanent scars (fibrosis). The symptoms are similar to other more common lung diseases, frequently resulting in misdiagnosis or delayed diagnosis. Some studies show that reaching a proper diagnosis for rarer lung diseases can take upwards of several years.
Of the known ILD conditions, the most common is idiopathic Pulmonary Fibrosis (PF). This condition causes the lung tissue to become scarred and stiff, reducing its size and capacity. The scarring with PF cannot be reversed or repaired, and there is no known cure. Currently, approximately 30,000 to 40,000 patients are diagnosed with PF each year, while another 40,000 lose their lives to the disease annually.
Despite scientific advancements and increased information available, timely and accurate diagnosis for PF remain a challenge. The course of the disease varies from person to person and can progress rapidly in some cases, increasing the necessity to have the condition diagnosed in its earliest stages. By the time patients learn they have PF, the condition may require reliance on oxygen use, hospitalizations, and can lead to poor quality of life, and a significantly shortened lifespan.
“One of the issues leading to a prolonged diagnosis is that patients may exhibit symptoms that are also common in other respiratory conditions, such as wheezing, difficulty in breathing, coughing and fatigue,” says CHEST member and associate professor in Pulmonary Medicine with University of Utah, Mary Beth Scholand, MD. “Without a precise diagnosis, ILD patients, specifically those with PF, can be misdiagnosed with bronchitis, COPD, COVID-19, or asthma and often go through a series of examinations, tests, and therapies for months. Closing the gap is critical so therapies can be initiated to manage the symptoms and progression of the disease.”
“As a catalyst for change in the PF community, we spoke with patients, healthcare professionals, physicians, and advocacy groups to advance an understanding of the PF diagnostic experience,” said Dana Ball, executive director for Three Lakes Foundation. “We approached CHEST when it became apparent that primary care physicians could use specific tools to identify high-risk patients with pulmonary conditions. This collaboration is the result of our common need to increase awareness among healthcare professionals and to improve patient outcomes.”
“CHEST has built a global reputation for advancing the best patient outcomes through innovative chest medicine education, clinical research and team-based care,” said Robert A. Musacchio, PhD, CEO of CHEST. “Three Lakes Foundation is known for its work in improving time to diagnosis and accelerating treatment options for PF. Through this partnership, we aim to change the trajectory of diagnosis, treatment and care for patients with ILDs like PF.”
Three Lakes Foundation is providing the initial funding for CHEST to begin designing an educational intervention that addresses the gaps in knowledge and practice and will play an active role in overseeing the development of the program. CHEST will pull together key healthcare providers across primary care, family practice, nursing and pulmonary medicine to collaborate in identifying needs and strategies to improve diagnosis and build awareness of ILD. CHEST will evaluate, research, and measure the program’s impact on clinical practice and patient care and estimates an overall reach of more than 100,000 healthcare providers by the time the program is fully executed.