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The Challenge of Diagnosing IPF

A patient complaining of cough and shortness of breath sits on the exam table. A healthcare provider takes out their stethoscope and listens to their lungs.

This scenario plays out countless times a week in doctor’s offices all over the country. Healthcare providers are looking for hints from the lungs, so they can determine the next step. Should the patient go for more tests or maybe try a medication like an antibiotic? What if there is an unfamiliar sound coming from the lungs like Velcro ripping apart? What should the provider do next?

The lungs certainly don't make it easy to determine the cause of the problem. Many lung diseases have similar symptoms and healthcare professionals may feel like investigative journalists trying to piece together clues about what might be causing a patient's symptoms. "The common symptoms of a lung issue are cough and dyspnea (shortness of breath). Almost all lung issues will cause these symptoms at some point in the patient's course. Time of onset, duration, severity, progression, timing and co-existing conditions are just a few of the many clues the doctor will need to use to begin to formulate the possible diagnosis,: says Dr. Albert Rizzo, senior medical advisor to the American Lung Association.

A thorough physical examination and health history can provide important information leading to a possible diagnosis. But healthcare professionals are not always familiar with the signs and symptoms of every lung disease—especially if it's a rare disease, such as idiopathic pulmonary fibrosis (IPF), which affects about 140,000 people each year.

IPF causes progressive scarring of the lungs. One of the key signs that sets IPF apart from other diseases is the sound of Velcro when you listen to the lungs. Even knowing this simple piece of information could significantly speed up the road to diagnosis and treatment for IPF patients, who often go misdiagnosed or undiagnosed for months or even years.

The earlier IPF is diagnosed, the better. Although there is no cure for IPF, there are medications and therapies that can delay the progression and help patients live a better quality of life. For some patients, lung transplant is an option. "IPF is a progressive disease so the earlier it is caught, the sooner we can do interventions that might help slow down the rate of scarring and help an IPF patient feel better," says Rizzo.

Learning about IPF diagnosis is one step healthcare providers such as pulmonologists, pulmonary care nurses, registered nurses, pulmonary function technologists and other allied health professionals can take to better serve their patients.

The American Lung Association, in collaboration with the Potomac Center for Medical Education, Postgraduate Institute for Medicine, and Rockpointe, has a free online continuing education course for healthcare professionals, called Current Evidence-based Management of Idiopathic Pulmonary Fibrosis: Collaborating to Improve Patient Care that addresses pulmonary fibrosis diagnosis, along with other important strategies for IPF management, shared decision-making and therapeutic options.

This free, on-demand online activity, taught by experts in pulmonary fibrosis allows physicians, nurses and respiratory therapists to earn up to one hour of continuing education credit. In addition to the continuing education course, The Lung Association offers comprehensive educational and support resources for patients and caregivers at

Through educational and support resources like these, healthcare professionals and patients can work together to reduce time to diagnosis and improve life with IPF. "Provider education is a vital part of improving the IPF patient experience. The American Lung Association is thrilled to make this continuing education course available for healthcare professionals, so they can improve their skills and better serve their patients," says Deb Brown, Chief Mission Officer at the American Lung Association. "Together, we can work to reduce the burden of lung disease."

This project was developed with support from Three Lakes Partners.

Related Topics: Health & Wellness, Impact,

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Submitted by Survivor at: August 22, 2018
Thank you for your efforts to educate health providers. I was misdiagnosed for over a year when I asked for a chest x-ray. That led to PFT that led me to a pulmonologist. Further tests showed IPF. I was able to listen to the doctor’s good lungs and then to my lungs. It was then I realized how sick I was. My GP should of known I had a serious lung problem. I had a lung transplant almost 5 years ago now. I’m so thankful.
Submitted by Pearl at: August 17, 2018
My father had ipf unhers
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