Up to 70% of People With Asthma and COPD Go Undiagnosed

In spring 2020, Jazzminn Hein received an automated phone call from The Ottawa Hospital in Canada, asking if she or anyone in her household had experienced wheezing, shortness of breath or other breathing problems in recent months. The question caught her attention: Just a week earlier, Hein, then 24, had gone on a stroll with her mother-in-law and newborn only to end up feeling like her chest was burning.

“I realized that I had had breathing issues from a very young age,” Hein said. As a child, she often had to catch her breath on the sidelines during gym class. As an adult, she frequently had to pause after carrying laundry up the stairs. So Hein pressed “1” to receive a follow-up call from a nurse.

A few months later, as part of a study conducted by researchers at the University of Ottawa, a doctor diagnosed Hein with asthma.

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Estimates suggest that 20% to 70% of people with asthma or another group of conditions called chronic obstructive pulmonary disease that causes similar symptoms, go undiagnosed.

To look for patients with those diseases, researchers placed automated calls to more than 1 million households across Canada asking about breathing issues. Many people hung up. But the research team talked to more than 38,000 people experiencing such symptoms, and ultimately found more than 500 patients, including Hein, with either undiagnosed asthma or COPD who could participate in their clinical trial.

Roughly half were told to follow up with their primary care provider and received standard care, such as a short-acting inhaler to be used as needed. The other half saw pulmonologists who frequently prescribed better, long-acting medication and worked with an educator who taught patients how to properly use an inhaler and avoid allergens, provided support to quit smoking, gave exercise and weight counseling, and more. These measures could help reduce symptoms, said Dr. Shawn Aaron, a lung specialist at The Ottawa Hospital and a professor at the University of Ottawa who led the research.

The results of the study, published this week in the New England Journal of Medicine, show that finding people with airway diseases and getting them care can pay off. People who “got the Cadillac treatment had much better outcomes than the group that just got usual care by the family doctor,” including fewer emergency visits for flare-ups in the year after diagnosis, Aaron said. But both groups saw improvement in breathing and quality of life — suggesting that diagnosis and even minimal treatment could make a difference.

How can you tell if you have asthma or COPD?

The diseases can look different from one person to the next, said Dr. Sonali Bose, a pulmonologist at the Mount Sinai-National Jewish Health Respiratory Institute.

People with asthma can go without symptoms for months until they are in a “perfect storm situation,” Bose said, such as when allergens like tree pollen or airway inflammation after a common cold cause a flare-up. Others may feel chest tightness after exercise, or experience coughing or wheezing every evening.

COPD, on the other hand, emerges over time as lungs are progressively injured by exposure to irritants. Smoking and air pollution are the most common causes. The symptoms are similar to those caused by asthma, but can also vary over the course of a day, a week or by season.

This makes the diseases hard to recognize: Many patients may not focus on respiratory complaints that rise only occasionally, and doctors may misattribute symptoms to other causes, like allergies. It can take years to pinpoint what’s causing symptoms, said Dr. Robert Burkes, a pulmonologist at UC Health in Cincinnati.

If symptoms start interfering with your everyday life, it’s important to tell a doctor. Mention if you have a family history of asthma, allergies or eczema, or have allergies or eczema yourself; these factors are linked to a greater risk of airway disease.

How are these diseases diagnosed and treated?

A provider will listen for abnormal sounds in your lungs, and may order a spirometry test to measure the amount of air you breathe in and out, and how quickly you can do it. Primary care offices often can’t do this testing. The need to go to a special testing lab may be one reason patients go undiagnosed, Aaron said.

But people who remain undiagnosed risk progressive damage to their lungs, which can make exercise or everyday activities even harder, Burkes said. Chronic respiratory conditions like COPD are the sixth leading cause of death in the United States and the third leading cause of death worldwide.

Doctors now have more tools than ever to help people manage asthma and COPD, Aaron said. There are long-acting inhalers, as well as injectable drugs for specific types of asthma. And more options for the two diseases may be on the way.

But, as the study found, patients can’t get those treatments if they don’t have a diagnosis.

“The important thing is finding the undiagnosed disease, making the diagnosis and then getting treatment,” he said. “If you do that, you will benefit.”

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