In 2017, an expert commission organized by the Lancet examined the current state of asthma care. That commission identified poor medication adherence as one of the principal barriers standing between people with asthma and improved disease outcomes. Adherence is “the biggest elephant in the room,” the commission wrote. “Although lip service is paid to optimizing basic management, in practice often very little is done beyond asking the patient if they are taking treatment.”
According to research in the European Respiratory Journal, more than half of all asthma patients fail to take their medications as directed. Some other surveys put that figure as high as 80%. Clinicians who treat people with asthma affirm that many are not following their medication plan. “Personally, I would say adherence is a problem for at least 50% of patients,” says Dr. Ruchi Gupta, a professor and asthma specialist at Northwestern University’s Feinberg School of Medicine.
The issue of poor adherence is so common that experts aren’t sure what percentage of asthma patients truly do have severe asthma. That’s because the condition is defined by its uncontrollability; if more people with severe asthma took their medications as instructed, it’s likely that a significant portion of them would get their asthma under control, and as a result would no longer qualify for a severe asthma diagnosis.
But increasing treatment adherence is a lot easier said than done. Part of the problem, Gupta says, is that even those with severe asthma may feel fine a lot of the time. Asthma has been called a “fluctuating disease” because its symptoms ebb and flow. Treatment often requires a person to take multiple oral or inhaled medications on a daily basis, even when they’re not experiencing symptoms. “It’s challenging for anyone to take a medication, let alone several, every single day,” Gupta says. Having to do so for years on end, as is the case for many severe asthma patients, is quite a grind. Even one missed dose can contribute to a flare, but there is often a delay between a missed dose and symptom exacerbations. So people don’t necessarily connect the risks of poor adherence to asthma flares.
Forgetting a dose is just one of the reasons people with severe asthma don’t take their medication as prescribed. In some cases, adherence problems may stem from a care provider’s lapses. In other instances, a patient may consciously decide not to take their meds. “The reasons for suboptimal adherence are multifactorial,” says Dr. Vanessa McDonald, a professor and lung-disease specialist at the University of Newcastle in Australia.
The consequences of poor adherence are often serious, and occasionally dire. Along with symptom flares, medication lapses raise a patient’s risk for trips to the emergency department. By some estimates, 60% of asthma-related hospital visits are caused by poor medication adherence. Medication lapses also raise a patient’s risk for asthma-related mortality. The World Health Organization estimates that 250,000 people die prematurely each year due to asthma.
Here, McDonald and other asthma specialists break down the different factors that contribute to poor medication adherence. They also detail the latest measures to improve adherence, including new technologies, advancements in treatment, and refinements to provider-patient interactions.
Read More: How Alternative Medicine Can Help People With Asthma
Dissecting the problem of poor adherence
Sometimes, people with asthma simply forget to take their medication. When you consider that inhaled corticosteroids (one of the most common treatments for severe asthma) sometimes have to be taken twice a day, it’s easy to see how even very diligent patients could forget a dose now and then.
Another barrier to perfect adherence has to do with operator error; the act of inhaling asthma medication is not as simple as swallowing a pill. “Inhaling of [asthma] drugs requires considerable skill and practice,” wrote the authors of a 2015 paper in the European Respiratory Journal. “Even if medication is taken daily, deposition in the lungs will be low with incorrect inhalation technique.”
Clinicians say they frequently run into these sorts of issues. “Are they holding their breath after inhaled corticosteroids for 10 seconds to make sure the medicine gets deep into the lungs?” asks Dr. Jonathan Gaffin, co-director of the severe asthma program at Boston Children’s Hospital and an assistant professor of pediatrics at Harvard Medical School. These are the types of technique miscues that can lead to flares. This is also one area where the failure may fall in part on a patient’s care team. Researchers have found that when people with severe asthma receive more upfront training and medication education, adherence rates improve.
Miscommunications between patient and provider can also drag down adherence. People with severe asthma who are younger or who have fewer years of formal education are more likely to experience medication lapses, and there’s evidence some patient groups may not completely understand their care provider’s instructions or treatment-plan justifications.
Most of these are categorized as unintentional forms of non-adherence. But in some cases, patients consciously choose not to take their meds. “There is intelligent or intentional non-adherence, whereby patients make deliberate decisions to either stop the treatment, alter the way they take it, or even neglect to initiate the prescribed treatment at all,” says McDonald. There are several reasons why people deliberately choose not to take their medications. Concern about side-effects is one of them, McDonald says, and this is another area where better patient-provider communication comes into play. If a person knows exactly what to expect from their drugs, and they also fully understand the risks of non-adherence—not only symptom flares, but an increased risk of hospitalization and deadly complications—this knowledge can improve adherence.
An aversion to drugs is another cause of deliberate non-adherence. “Not wanting to rely on daily medication is a common reason,” McDonald says. Financial constraints are another, she says. Some asthma medications are expensive, and a patient’s insurance may not cover enough of the cost to make the drugs affordable for them.
The diverse range of factors that drive poor adherence is one reason it remains such a common and intractable problem. But there are solutions.
Read More: How Climate Change and Air Pollution Affect Kids’ Health
New tools and techniques for better adherence
It’s clear that traditional approaches to starting severe asthma treatment—a doctor telling a patient what to take and how to take it, followed by an occasional check-in—are not getting the job done. A newer tactic that research supports gives patients more control and more input into the creation of their medication plan.
For example, a 2010 randomized controlled trial found that when clinicians and patients discussed together the benefits, risks, and costs of different treatment plans—not solely in order to mitigate symptoms, but to suit the patient’s own priorities—adherence one year later was significantly higher when compared to a traditional top-down relationship where the clinician alone chose the treatment plan. “Involving people with severe asthma in shared decision-making can help improve adherence to treatment,” McDonald says.
There’s also evidence that patients with severe asthma who are treated by a multidisciplinary team of specialists, as opposed to solely in a primary-care setting, are more likely to adhere to their medication plans. “This team could include a pulmonologist, an allergist, a nurse specialist, and some sort of mental-health support,” Gaffin says. Through the lens of their various specialties, this team can help suss out and address issues that lead to medication lapses. This team can also ensure that a person’s medication plan is part of a more comprehensive approach to asthma control—one that may also include lifestyle and environment adjustments—which may be more efficacious.
Internet- or smartphone-based reminders are another solution that some preliminary research supports. According to a 2021 study in Scientific Reports, pairing a medication self-management app with an inhaler-installed electronic medications monitor (or EMM, which tracks whether a person has taken their meds) led to robust adherence improvements. The app not only alerted the patient when to take their medication, but also provided feedback on their inhaler use and continuing-education materials. Newer “smart” medication-delivery devices are also helpful. According to research in the journal Asthma, smart nebulizers are able to adapt to a person’s unique breathing pattern and respiratory capacity to ensure the right amount of medication is deposited deep in the user’s lungs.
Last but not least, new forms of treatment are reducing patient reliance on inhaled medications. Biologics are the big story in this space. These drugs, delivered every few weeks via injection, work by targeting the immune cells, proteins, genes, or pathways that underlie asthma symptoms. “These have been totally transformational,” says Dr. David Jackson, a respiratory medicine specialist at King’s College London. “Since 2017, a new biologic has been added to our armory on almost an annual basis, and the number of patients with uncontrolled asthma has gotten smaller and smaller.” Biologics are usually administered in-office. This added layer of provider oversight, coupled with a comparatively infrequent dosing schedule, makes adherence much more likely. However, the cost of these drugs is still considerable, and not all patients are good candidates.
Read More: What to Know About the Latest Advances in Managing Severe Asthma
An urgent problem
According to the most current data from the U.S. Centers for Disease Control and Prevention, roughly 6% of children and 8% of adults in the U.S. have asthma. The disease’s prevalence has been trending upward since 2001, and while there are signs that this increase has leveled off, recent surveys have found that severe asthma may be more common now than in years past.
This may be due to the gradual aging of the American populace. Older adults with asthma are more likely to experience severe and uncontrolled disease, and the country’s average age and proportion of adults 65 or older has been steadily rising—and is expected to rise further for decades to come. All of this suggests that the number of Americans with severe asthma is likely to grow, not shrink, and so solving the problem of poor adherence is likely to take on even greater importance in years to come. “Being older is associated with better intentional adherence, but unintentional non-adherence may be an issue in this age group due to issues with the use of inhalers and age-related factors such as poor vision, decreased manual dexterity to use the inhalers correctly, and reduced ability to inhale the medication deeply,” says McDonald.
She and other experts say that there is no silver-bullet solution to the adherence problem; it’s a multifactorial challenge that will require a multipronged response. But with greater development, refinement, and implementation of the tools we have today—some combination of smarter tools, better medicines, and improved provider-patient communications—asthma specialists are hopeful that they will be able to greatly improve adherence among people with severe asthma.
There’s work to be done, but there’s reason to believe that major improvements are on the way—or here already.