Respiratory Organizations Tackle the Challenge of Reducing Delays in Diagnosing Complex Lung Diseases
April 18, 2022
Chicago — 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 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.
About the American College of Chest Physicians®
CHEST is the global leader in prevention, diagnosis, and treatment of chest
diseases. Its mission is to champion advanced clinical practice, education,
communication, and research in chest medicine. It serves as an essential
connection to clinical knowledge and resources for its 20,000+ members from
around the world who provide patient care in pulmonary, critical care, and
sleep medicine. For information about the American College of Chest
Physicians, and its flagship journal CHEST®, visit chestnet.org.
About Three Lakes Foundation
Three Lakes Foundation is a nonprofit dedicated to serving as a catalyst
for uniting research, industries and philanthropy in pulmonary fibrosis. We
connect entrepreneurs, advocates and institutions to an innovation
ecosystem that will transform our approach to improve time to diagnosis and
accelerate new therapies. To learn more, visit threelakesfoundation.org.