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'world-first' clinical trial finds new way to detect undiagnosed asthma and copd
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dr. shawn aaron’s study confirmed participants reduced their time spent utilizing the healthcare system by 50 per cent following treatment for their newly diagnosed asthma or copd.
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living with an undiagnosed lung disease, such as asthma or copd, is a reality for an estimated 70 per cent of people in canada. these conditions remain undiagnosed and under-treated, which can lead to people being misdiagnosed with other conditions that have mimicking symptoms, such as shortness of breath or breathlessness after mild activity.
a new study published in the new england journal of medicine has found a new way to tackle these populations that remain undiagnosed, getting them the treatment they need and, in turn, improving their overall quality of life immensely.
dr. shawn aaron, a professor at the university of ottawa and senior scientist and lung specialist at the ottawa hospital, developed the study alongside a team of medical researchers. they set out to reach people with undiagnosed asthma and copd with the intention of helping more people finally get a definitive answer about their health so that they no longer had to live with an undiagnosed lung condition.
“we were interested in finding people in the community who had respiratory symptoms. that is, cough, wheeze, shortness of breath or chest tightness, who have never been diagnosed with lung disease,” dr. aaron said. “are there a lot of these people in the community? and if we can find people who are suffering who are not diagnosed previously with lung disease, if we make a diagnosis and then we treat them intensively, can we make them better?”
jazzminn hein, a participant in the study, was just one of many people who learned of their diagnosis during the study. she previously had a decades-long diagnosis of anxiety and panic attacks, with her symptoms being dismissed by health-care providers meant to protect and care for canadians.
“any time i would have one of those, i guess they were asthma attacks. but anytime i had one, i’d go to the hospital and say, ‘okay, it physically feels like there’s something sitting on my chest. it’s really hard for me to breathe.’ and every time i went to the hospital, i was dismissed, saying, ‘you’re just having a panic attack, or you’re having an anxiety attack,’” hein said.
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it wasn’t until she picked up the random automated call that started the study that things changed for the better.
the study design and results
dr. aaron and the team called random phone numbers between 2017 and 2023 to find the participants for the study. the automated system, which dialed numbers at random, asked for participants with symptoms, such as unexplained shortness of breath, wheezing, and a prolonged cough with mucus, to press one.
those who did were later called back by a nurse who conducted a more in-depth analysis of their symptoms to determine if they qualified to come in and take a spirometry test, which assesses a person’s lung capacity and is used as a primary diagnostic tool for various lung diseases.
the reason behind the automated system was to create a random sample of canadians for the best overall results.
“we wanted to get a random sample of the canadian population, and it’s very difficult to randomly sample the population,” dr. aaron said. “if you want to randomly find people in the population who might have a respiratory problem, the best way to do it is through random digit dialling because almost everyone in canada has a phone.”
over a million calls went out using the automated system. roughly 85 per cent hung up the phone before listening to the automated message. about 200,000 engaged with the call in some way, either confirming their symptoms or their lack of interest in participating in the study via the pre-set selections.
“they either pressed one, saying that yes, there was someone suffering from respiratory symptoms, and they authorized us to call them back, or they pressed two, or they pressed three,” dr. aaron said. “if they pressed two, it means there was no one in the household who had respiratory symptoms, and if they pressed three, it meant they weren’t interested.”
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after all was said and done, 50,000 people displayed interest in the study based on respiratory symptoms, with 35,000 being interviewed to determine if they qualified. roughly 26,000 were evaluated using the spirometry test. out of those 26,000 participants, 21 per cent were found to have undiagnosed asthma or copd.
promising results show the dire situation when accessing care for lung diseases
since many new diagnoses were made, and in the process, lives changed for the better, the study’s method of finding participants and the results prove that using this type of data collection process can make a real difference for canadians living with undiagnosed conditions.
hein remembers lying in bed with her daughter while pregnant with her second child and picking up the call that would eventually change her life.
“after everything that was going on with my pregnancy, my thought was, ‘okay, worst thing that happens is i go down, i participate in the study, and it’s either a waste of my time or i find out that i have asthma and at least i know what’s going on.”
after answering the survey and being approved for participation in the study, hein went through the process of going to the ottawa hospital to answer more questions about her health and participate in two spirometry tests, one initial test to determine if follow-up is needed, and a second to confirm what the first test recorded.
afterwards, hein worked with dr. aaron to develop a treatment plan using different inhalers. prior to the study, however, hein didn’t even consider herself to have asthma, even though she’d been living with it her whole life.
while the trial helped hein and many others, the positive results shed a grim light on how people often fall through the cracks of the healthcare system or are subject to dismissal and quick fixes that lack effectiveness.
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dr. aaron wasn’t surprised at the results, but they did prove that many people are living without proper care in the country because they were either unaware of what their symptoms could be, didn’t seek adequate testing for the symptoms, or were simply dismissed when they did turn to the healthcare system for help.
before receiving the call, hein didn’t think twice about how her symptoms could be anything but anxiety, as that’s what medical professionals had been telling her throughout her life. she continued to go to the hospital for care when her breathing got too difficult, but the only test they did was listening to her lungs using a stethoscope.
“i think once or twice they listened to my lungs, but they didn’t say much. they said my lungs sounded fine,” she said.
every time they sent hein on her way, she was disheartened once again, feeling as though something was wrong, but every medical professional she’d seen had no good answer to explain why she had been short of breath for most of her life. however, she does understand how it can happen if people are unaware of the possible causes.
“say you’re having an asthma attack, right? and you’re struggling to breathe, but you don’t know it. most people associate panic attacks with that exact same thing. struggling to breathe, or hyperventilating, rocking back and forth, shaking,” hein said. “people associate that typically with anxiety or panicking when in reality, you could actually be having an asthma attack.”
she continues, “there’s so much more awareness around mental health that people probably don’t even consider the possibility of having asthma.”
considering hein started having asthma symptoms at around seven or eight years old, it’s simple proof that the health system failed to diagnose her with the right disorder, making much of her life a confusing and constant battle to find and treat what’s really wrong.
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dr. aaron doesn’t believe that hein’s experience is the rule when examining the number of people with undiagnosed respiratory issues, but rather a bigger monster is to blame for the high numbers of those living with conditions without the proper care.
“there’s a whole bunch of systemic issues with the healthcare system. they don’t have enough doctors, so people can’t get in to see doctors. they also try to ration healthcare,” dr aaron said. “it’s very hard to get a patient booked for a proper spirometry test and a proper lung function lab. the government deliberately restricts the licenses for these things. they want to save money.”
he continued, “the worry is that if they let too many labs open up, too many doctors will order the test, and they’ll be spending a lot of money on the testing, which is crazy. so instead, they’re letting people suffer in the community.”
what many in power fail to realize is that testing for care would take the burden off the healthcare system because those with undiagnosed diseases often spend more time seeking care than those who already know what they have.
dr. aaron’s study confirms that fact, with the participants reducing their time spent utilizing the healthcare system by 50 per cent following treatment for their newly diagnosed asthma or copd. he also plans to do a follow-up economic study to drive the point home.
“of course, it’s going to save money (more accessible testing), but you know the problem is that the government doesn’t always behave rationally,” he said. “as a physician who’s worked in this system for 30 years, i just get more and more frustrated because i see people suffering, and they don’t need to suffer. and they suffer because we don’t have enough access to healthcare.”
the difference a diagnosis can make
after hein finally received a proper diagnosis for her asthma, her health—and the results of years of being misdiagnosed—improved drastically. before the study, she struggled with daily activities, such as cooking, cleaning, or going for walks with her family, becoming breathless much easier than what is typical. afterwards, that changed entirely.
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“my muscles don’t hurt as much. i don’t get nearly as many headaches. i’m not nearly as tired as i was,” hein said. “all in all, my quality of life has increased substantially after being diagnosed.”
it wasn’t just hein who saw her quality of life improve following the study. all the participants who received a proper diagnosis and care saw improvements.
“our study has proven that if we treat you, you will feel much better. the quality of life improved drastically in the people who were treated,” dr. aaron said.
getting proper care isn’t easy for those who were not participants in the study but may have the same undiagnosed conditions. that said, if they can master the art of self-advocacy, they may be able to push their healthcare providers to do the proper tests.
“people really need to push their doctors if they’re having the same symptoms as i did, or even other ones that may be linked to asthma or copd,” said hein. “because, if you’re having those issues and you don’t personally feel like you’re having a panic attack, then there’s something going on with your respiratory system.”
dr. aaron echoed that same sentiment, saying, “if you’re having symptoms of shortness of breath or wheeze or cough or chest tightness and you’ve never been diagnosed with lung disease, then something is wrong, and you need to advocate for yourself.”
it can be hard to push back against a medical professional, especially when you’ve grown up believing they have all the answers. it’s crucial to remember that doctors are not intentionally misdiagnosing people. more significant issues are at play, such as access to the proper testing and funding for these tests, keeping people stuck without the correct diagnosis.
that said, getting an accurate diagnosis can change life for the better, so arming yourself with the information needed to challenge a doctor who isn’t readily offering the tests is vital.
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“as a patient, if you go in armed with knowledge, the doctor will listen. it’s a rare doctor who will dismiss a patient who comes in with knowledge and a plan in place,” dr. aaron said. “most doctors will follow the patient’s plan as long as it’s not dangerous, and asking for a spirometry test if you have unexplained respiratory symptoms is totally legitimate.”
according to hein, respiratory diseases don’t get the recognition they deserve, so alongside self-advocacy and education, awareness needs to be implemented so that people with the symptoms know about asthma and copd and how it could be affecting them.
“it would be good to have more awareness around respiratory disease and the fact that it can impact your life more so than you think it can,” she said.
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