Activity transcript

Dr Pinnock: Hello, I'm Hilary Pinnock. I'm a family physician in the UK, and I'm the professor of primary care respiratory medicine at the University of Edinburgh. Welcome to this program, which is entitled Identifying Severe Asthma in Primary Care Practice and When to Refer.

Joining me today are 2 of my colleagues from the International Primary Care Respiratory Group, the IPCRG. We are a group of primary-care professionals from around the world who are interested, and have a specialist interest in, respiratory medicine. Joining me first is Catalina Panaitescu, who is a family physician and the coordinator of the Romanian Primary Care Respiratory Group, RespiRO, and also Jamie Correia de Sousa who's an associate professor at the School of Health Sciences at the University of Minho in Portugal, and also a family physician. Welcome.

Dr De Sousa: Hello.

Dr Panaitescu: Hello.

Dr Pinnock: In this program, we're going to be focusing on the management of patients with uncontrolled asthma. We want to talk a bit about the reasons for poor control, and how we can manage that in primary care. We're going to identify the minority of patients who need additional specialist assessment, as patients with severe asthma, and difficult-to-manage asthma. Before we start discussing management strategies, we need to start with some definitions. Catalina, could you tell us a bit about what we mean by these terms?

Dr Panaitescu: A good starting point would be to remember that asthma control has two domains, the symptom control and the future adverse outcomes. Uncontrolled asthma means poor symptom control and frequent or severe exacerbations. Difficult-to-treat asthma is uncontrolled asthma despite Global Initiative for Asthma (GINA) step 4 or 5 treatment, or asthma that requires such treatments to maintain good symptom control and to reduce the number of exacerbations.

Severe asthma is a subset of difficult-to-treat asthma. It includes asthma that is uncontrolled despite adherence to maximal, optimized treatment, and therapy of contributory factors, or asthma that worsens when a high-dose treatment is decreased. In primary care, we prefer the concept of difficult-to-manage asthma, which I like, because it includes also the patient perspective. Difficult-to-manage asthma is asthma that either the patient or the clinician finds difficult to manage. There are two main groups, patients whose asthma has been controlled in the past, but who has lost control now, and patients whose asthma has never been controlled.

This variety of terms and definitions actually points out that asthma is not a single disease but more an umbrella diagnosis for several diseases with different endotypes, meaning distinct mechanistic pathways, and phenotypes, which means different clinical presentations. The definitions are important to asthma management, because of their implications on treatment and prognosis.

Dr Pinnock: Thanks, Catalina. I think we recognize these patients. Don't we, in our clinical practice? It's good to have them structured in this way, because if we can begin to define these groups, then we can begin to understand how best to manage them. Thank you for that. How common are they? I mean, I have the feeling, I see quite a lot of these patients in my practice, Jaime. Can you give us a bit of information about how common they are?

Dr De Sousa: Yes. Thank you for asking. We don't have a lot of research on that. Actually, we need more. We have data from a Dutch population survey in patients with asthma aged 18 years or over. The researchers found that 24% were being treated on steps 4 and 5. Note that 17% still had poor symptom control, in spite of being medicated with what is recommended for these 4 and 5 stages, and 3.7% had severe asthma though they had good adherence and proper inhaler technique.

We need more research to find out who has difficult-to-manage and who has severe asthma. As Catalina said, we have to distinguish these two. We'll see later on, difficult-to-manage asthma should mostly be addressed in primary health care with an adequate team approach. Patients with severe asthma need to be recognized by the team and referred to secondary or to tertiary care.

Dr Pinnock: Severe asthma represents 4% of patients with asthma. That sounds like a small minority, but it's very important in terms of the burden of disease. Just to think about that from the perspective, both of the patients and their family, but also from the perspective of the healthcare service. From the patients' point of view, they just seem to accept it sometimes. They accept the fact that they are living with symptoms every day. Many of them will be using puffs of their reliever inhaler maybe 2 or 3 times a day. We can count that, of course, as clinicians, because we know how many inhalers we're dispensing and prescribing for patients. But we don't often stop to think how that must be restricting their activities, things they choose not to do, but also the family. You don't go on a camping holiday if your asthma is triggered by pollen, so the whole family misses out on activities.

Of course, you pointed out, Catalina, that it's not only symptom control, but it's also being at risk of exacerbations. These patients are at risk of attacks, whether they're just waking at night and disturbing their sleep, whether they're ending up in emergency departments. Of course, occasionally, asthma deaths still occurs. The Global Asthma Report addresses the disability adjusted life years. That just means the number of years that people have lost of poor health, because of their asthma. What strikes you from that graph is that affects patients of all ages, children, elderly patients, young adults, men and women. It's across the board. The other issue, of course, is the cost to the healthcare services.

Uncontrolled asthma is a costly condition. It costs because of emergency care. It costs particularly if patients are in the hospital, and it's costly to the economy more generally, as patients miss time off from work or indeed turn up to work when they're too tired to be thinking straight. Lots of productivity, and in some cases, disability benefits, because they're not working. It's a burdensome condition. But, of course, it doesn't need to be that way. One of the other interesting graphs from The Global Asthma Report, looks at the admission rate across the years. Many of the countries have actually reduced their hospital admissions.

One classic example of that is Finland, where a national policy that involved all sectors. These include primary care, secondary care, but also engaged the patients and supported self-management. The result was fewer disability pensions. Finland halved admissions and resulted in a 86% reduction in asthma deaths. A doesn't need to be a burden. That is why we need to be focusing on what we can do about the patients that you've both highlighted. Uncontrolled and severe asthma are important to everybody, and we can do something about it. Jaime, the IPCRG has got an approach to this. Can you talk us through that?

Dr De Sousa: We have all the features that have been addressed in a work that has been developed by the IPCRG, which produced the difficult-to-manage asthma structural approach. This was done some years ago. This approach can be done using the algorithm provided in the IPCRG desktop helper.

For more information about the IPCRG Desktop Helper on Difficult to Manage Asthma, please visit https://www.theipcrg.org/display/TreatP/Home+-+Difficult+to+manage+asthma.

In this desktop helper, we should start looking first if the patient really has asthma. There is a lot of misdiagnosis in chronic respiratory diseases. People with asthma are labelled as having chronic obstructive pulmonary disease (COPD), and vice versa, and some don't have either of them. Once you get a label of being an asthma patient, it's very difficult to remove it. It has some consequences in some countries, including in terms of job opportunities and so on, so it is really important to have a proper diagnosis of asthma and improve the capacity for diagnosis in primary health care.

We also need to check if the patient smokes. There's a lot of patients, with asthma, still smoking. We have also to check if the patient is exposed to second-hand smoke or to biomass fuel combustion fumes, which happens in half of the households around the globe, which is an extremely important contribution to chronic respiratory diseases. It's also very important to confirm the smoking status at every consultation, and also to provide support for patients to quit smoking. We also need to consider patients' lifestyle, physical activity, obesity and so on. It is essential to address the problems of correct inhalation technique in every encounter and to promote adherence to treatment. This should be done either by the family physician or the practice nurse or any health professional involved in the care of these patients. It is essential to discuss with the patients how we can achieve more control of environmental factors like pollens, dust and so on.

There are a lot of asthma triggers that a patient needs to be aware of. Patients have to be aware of what they should be doing to prevent more symptoms due to this exposure, which cannot be avoided. Physicians also have to consider the role of comorbidities and other medications that contribute to poor asthma control. As a compliment, Difficult-To-Manage Asthma Project produced an acronym, named SIMPLES, which summarizes this approach and provides a very easy tool for primary healthcare doctors and nurses. The acronym stands for, SIMPLES is, Smoking, Inhaler-technique, Monitoring, Pharmacotherapy, Lifestyle, Education, and Support.

As I mentioned, the issue is about to be sure the patient really has asthma, and this can be difficult. Proper diagnostic tools are not available in all clinical settings, even in developed countries. There are also some issues in some countries where primary healthcare doctors are not allowed to do the diagnosis of asthma, and they have to refer. But when available, first of all, you have to use the clinical contacts because asthma is mostly a clinical diagnosis, which should and can be confirmed, using some additional testing. Usually spirometry is the recommended testing. Spirometry is not available in all primary care settings. Sometimes, we have to wait. If the patient is asymptomatic when, the diagnosis may be more challenging.

The step of diagnosis is very important. To establish the diagnosis, you have to combine the clinical history of the patient with the symptoms and probable exposure. There are also patients who have asthma overlapping with COPD, which is also an important reason for difficult to manage asthma. So all these have to be addressed as much as you can within your own context of practice, which is different from country to country. It is a challenge in some countries, but we have to improve and we have to try to get as better as we can in terms of proper tools, clinical tools, access tools, spirometry so that we can help improving this diagnosis.

Dr Pinnock: I was just thinking of a patient that I saw. That it's not just a question of making a diagnosis in the first place. It's a question of reviewing it. I'm remembering a young man I saw who's known to have asthma, had had it since childhood. There was no doubt about the diagnosis. His symptoms of breathlessness and wheeze were causing more and more trouble. And he'd upped his treatment, he'd seen our asthma clinic, and the treatment had been upped. Eventually I remember seeing him and thinking, "He looks a bit pale." And I did a hemoglobin, and it was around about seven, and in fact he had a blood dyscrasia. And that's why his symptoms have got worse. So I think it's also not only making an initial diagnosis, but it's actually reviewing that diagnosis, and identify what is responsible of the increase in symptoms.

Dr De Sousa: That's probably why we need this structured approach because you're not only going to confirm the diagnosis, you also go to alternative diagnosis, and also endurance and proper inhaler technique. You have to go through all steps and check if the patient is really doing everything to control asthma. Starting with the first question, is it asthma, but also does it have other cognitive diseases that can make it worse.

Dr Pinnock: Catalina, you had a suggestion.

Dr Panaitescu: I just wanted to add that I perceive that our role as primary care physicians is also to raise patient's endurance to treatment because this is one main issue. There are research showing that patients underestimate their symptoms, so each time we see a patient with asthma, even if he or she came for a different problem, we should check the symptoms.

Dr De Sousa: Endurance is important. For many patients, inhaled corticosteroids (ICS) are associated with an improvement in symptoms. When patients get better, they stop the ICS, and that makes the asthma get worse, but it doesn't get immediately worse. So, they don't relate their worsening to ICS withdrawal, because the worsening of symptoms occurs few weeks later. The explanation may be that it takes time to the inflammation process to restart. It's very difficult for a patient using an inhaler daily and understanding that they need it because otherwise they will get the symptoms sooner or later.

For more information about the IPCRG Asthma Right Care Project, please visit https://www.theipcrg.org/display/TreatP/Asthma+Right+Care+-+Information+for+clinicians+and+patients.

Also, they don't go back to using the blue inhaler alone, which is very dangerous. We are more and more recommending that we use the blue inhaler, meaning a short-acting beta-agonist (SABA), or long-acting beta-agonist (LABA) together with an ICS all the time for symptom controlling for relief because this is probably the best way to have symptoms controlled.

Actually, the IPCRG has started the project called Asthma Right Care, which is really raising awareness about the overuse and over reliance on SABAs as a very dangerous medicine for asthma patients, and we need to review the way that people are using and overusing SABAs.

Dr Pinnock: The other aspect is about supporting self-management. You were talking about patients starting and stopping their ICS, and I think we all have a bit of understanding as to how that happens. We do empathize with this. It's difficult to remember treatment, and they're steroids, and do you really want to take something forever? I do think we understand this and empathizing with the patient, but helping them to understand what the treatment can do for them-

Dr De Sousa: Exactly.

Dr Pinnock: The patients will make the informed choice that this is the best way to manage their asthma.

Dr De Sousa: That's why teamwork approach is so important because if you work together with your practice nurses in an integrated way to have a proper follow-up, and a structured approach, and structured care for patients with asthma, you can improve the endurance by working closely with a patient and their family. It is also good to use media. We have now some apps that patients can use. There are proper education tools that are available on the internet. There are leaflets. You should have the asthma control plan, that you have to hand over to the patient so that they know what to do. This is extremely important to empower the patients, so that they build that capacity to self-control their asthma. I know you have been working a lot about that, and this is a great approach.

Dr Pinnock: We have to be patient.

Dr De Sousa: Yes.

Dr Pinnock: I'm just thinking again of some of my patients. You explain again and again about how inhaled steroids work, about their safety, about the benefits. And again and again you see this pattern of stopping and things relapse. Eventually a patient will get to the point where they suddenly say, "Do you know, I think it'd be a good idea if I took these inhaled steroids regularly." I think, "Yeah, I've been saying this for ages." But it's going to work much better when the patient comes up with a solution.

Dr De Sousa: We manage to have this structured approach for diabetes. We have an excellent diabetic approach in many countries with the teamwork, and empowering the patients. They learn how to do their insulin injections and everything. Why aren't we doing the same for asthma? I think it's a matter of working better together, having more educational opportunities for our colleagues, so that we involve everybody in the care of these patients because they deserve it and they need it.

Dr Panaitescu: I think I know where the difference is. In diabetes, usually there are national programs. Diagnosis is more accessible. Treatment is also more accessible. From what I know, the cost of ICS isn't low in many countries. When patients make their budget for drugs, they exclude the head corticosteroids, mostly because they don't feel an immediate relief. So I think that we should, at organizational level, raise access to diagnosis and treatment, in terms of costs.

Dr Pinnock: Another factor is public awareness. Patients are not aware of asthma in the same way. They're not aware of the potential dangers. We've been talking about patients with severe asthma. These patients have a huge morbidity and a huge risk of death. Patients aren't aware of asthma deaths. I've got a PhD student in the SBUK Center for applied research in the UK, and she's been talking to parents whose child either died or had a near fatal asthma attack. One of the messages that's coming out was, "I didn't realize you could die from asthma." The public awareness, the importance of asthma, particularly severe asthma is just not there.

Dr De Sousa: The public health approach, as Jaime just mentioned is extremely important, and I know that IPCRG has been doing a lot of work. We are part of the GARD, which is Global Alliance Against Chronic Respiratory Diseases, and we have been discussing with many other professional and patient organizations how to persuade governments to have an approach to asthma that helps lowering the costs, making asthma medicines, treatment and diagnosis accessible to clinicians and patient. We have a similar approach as we have had with diabetes and cardiovascular diseases. It should have been the main target of the in the past years because of their importance in terms of prevalence. We really need to have this kind of approach, which can make it as accessible.

Dr Pinnock: And it can work.

Dr De Sousa: It can work.

Dr Pinnock: In Finland, there was a national program. There were media campaigns, and everybody was up-skilled. It worked. Similar work is being done in Brazil.

Dr De Sousa: Yes.

Dr Pinnock: It can work. We can save lives.

Dr De Sousa: There are a lot of approaches they have been done for diabetes in the last 15 years. The approach for asthma is similar. It went very well as a structured program involving all the healthcare professionals including pharmacists. Pharmacists are key factors in terms of asthma control because ultimately all patients will go and get their drug in the pharmacy.

Dr Pinnock: That's a straightforward approach that covers the really important aspects. We know how to identify uncontrolled asthma. We've got a structured approach to manage it, but, unfortunately, there are still some patients whose asthma remains difficult to manage. We now need to think about what we do next. Catalina, talk to us a bit about how we move on when we can't manage to control this asthma.

For more information about the Global Alliance Against Respiratory Disease, please visit https://www.who.int/gard/en/.

Dr Panaitescu: In the case of these patients, we have, of course, to refer them to the secondary or tertiary care. About the referral process, we agreed that there are some points which should be highlighted. Who, when, where and how to refer. To the first two questions, you already answered. We will refer patients who continue to have difficult-to-manage asthma, but only after review and steps to reduce all possible contributing factors and ensuring they have a guideline-based treatment. We will refer them preferably to clinics with experience in difficult-to-manage asthma, able to provide care and treatment by a multidisciplinary team.

The question now is how to refer. In order to get the most value from a referral, we recommend the following key information to be included in a referral letter and the IPCRG provides an example of such a referral letter. This should include the reason for referral, meaning the current concern, the criteria on which the original diagnosis was made, if available. Any measures of current control, the conclusions of the structured approach, inhaler technique, and adherence.

For more information about the IPCRG Referral Letter, please visit https://www.google.com/search?client=firefox-b-1-d&q=IPCRG+referral+letter.

Another important point is the patient understanding of his or her condition. Asthma may impact quality of life. Any concomitant atopic pathology and treatment if existing, may affect asthma management. To conclude, I would say that we should refer only when needed, and only after a structured approach of assessment and management has been done. This is perfectly feasible in primary care, using the SIMPLES approach.

Dr De Sousa When patients are not being properly assessed for difficult to manage asthma, physicians and the healthcare team doesn't go through all this algorithm to check if everything has been done. Patients may end up with too much medicines for controlling their asthma, high doses of ICS, high doses of LABA, and sometimes even high doses of oral steroids. Oral steroids, at long-term, have side effects. These patients need to be referred, if all the steps had been addressed in primary healthcare level to control the asthma. One of the reasons that Catalina mentioned, that they will have to be referred, is that they are on high doses and they can be treated with alternative medicines that can be done in second and tertiary level.

Dr Pinnock: Thank you for that. It sounds to me as though primary care, we are absolutely pivotal to the management of these patients. We are the ones that will detect them, the 20% of patients who have difficult-to-manage asthma. We recognize, because we are family physicians. We recognize the huge impact it has on their lives and we, of course, are aware of the burden it has on health care services in the economy. We are able to follow that kind of structured SIMPLES approach. We are able to spot those patients, the 4% whose asthma does not respond to those standard treatments. Of course, we are able to make the referrals to our specialist asthma colleagues. Perhaps time for some punchlines. Jaime, what would be your punchline, the take-home message that you want people to remember?

Dr De Sousa: I would say that, in every consultation, mostly in patients with difficult-to-manage asthma, an probably in all patients. The algorithm, that was produced by the IPCRG, or even the SIMPLES approach, should be used so that we are really following the patients in a proper way. It should be a teamwork approach involving practice nurse and a family physician. This is the way to go in every consultation for asthma patients.

Dr Pinnock: Catalina, what would you like us to remember?

Dr Panaitescu: Well, I think it's important to remember that asthma is not only one disease but several diseases. We should keep in mind before referring a patient, to do everything it's possible using this algorithm. This algorithm helps to differentiate between severe asthma and difficult-to manage asthma, especially when the health care systems are not so developed.

Dr Pinnock: Okay. I think my take-home message is that severe asthma is never something we should accept. Patients do tend to live with it and get used to it in some way, but we should never accept that situation. We need to learn from countries that have succeeded in achieving substantial reductions in the burden of asthma. We should learn from studies that report how they have done this.

There are ways to improve the lot of patients with asthma. We should never tolerate poor symptom control. The patients, who are at risk of attacks, can be improved. Thank you very much, Catalina and Jaime, for helping with this discussion and thank you to all of you for listening to this spotlight.

This transcript has been edited for style and clarity.