People with severe asthma reported a wide range of experiences regarding medical care provided. For the older people we talked to, changes in knowledge of how to manage asthma and the recent availability of more potent medications were uppermost in their minds. Some people recalled a time when available asthma treatments were restricted to vaporising liquids, steam tents and altering the bed angle for postural drainage.
Denise clearly recalls the smell of a lamp her mother used.
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I can remember mum burning a little lamp to help me breathe when I was a child. So I can remember right back to when I was a kid, always being the sick one. These little lamps burning to try and help me breathe, I hated them because they smelt disgusting. And always being rubbed with Vicks and all that sort of stuff, just to help me breathe. Propped up in bed, and just accept that as normal. Because to me that’s what it was. Yeah.
Diana had postural drainage as a child.
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I was about five or six, and the doctor suggested that I have my bed raised at one end for postural drainage for my chest, which took a little bit of getting used to, sleeping in a strange angle … there was really nothing anybody could do in those days.
Ian can still see himself back in a steam tent in the hospital.
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My first memory of asthma would be in the local hospital when I was very young, in a steam tent. Which I don’t know if you’ve ever heard of that particular style of treatment. In the early 1960’s I would have only been two or three. And the range of unpleasant-tasting medicines that were administered at the time to stop coughs and allegedly help your asthma. It was black and I think from what I remember it had in it ammonia, ammonia and something I think it was called. But medical technology has improved hugely, particularly in the last 20 to 30 years.
Asthma care has increasingly focused on personalised management for severe asthma. Guidelines for healthcare providers include recommendations for confirming the diagnosis and severity, identifying and treating co-existing illnesses and addressing risk factors such as smoking. The roles of different types of healthcare providers in providing severe asthma care have also been outlined. In Australia most people with severe asthma will be referred by their GP to a general respiratory clinic, however in some locations a specialised severe asthma service involving a range of healthcare providers is available. [Chung et al 2018].
People we interviewed talked about who provided the medical care for their severe asthma and where care was accessed. The main three providers mentioned were the GP, specialist, and asthma nurse. Commonly, specialists were seen as having the most insight into severe asthma, and the ability to provide longer term solutions.
Hassan hopes his specialist will prescribe a new improved medication for him, but he does also visit his GP.
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For example I go to my specialist every say four or six months, depending on severity of the problem, I’m looking for new medicine because I know that the science is evolving every day, progressing, the technology is changing, so I’m hoping some better medication is coming, so that’s the reason I see my specialist. But sometimes when I’m not able to access my specialist I go especially when I get a cold, because when I get cold I’m worried about my asthma being triggered, so I go to my GP, try to control it, if it’s necessary to take some antibiotic, so that my lung is not affected by some infections. So that’s kind of support I get from them.
Lauren sees the GP to get scripts and the specialist for her action plan.
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I feel like if my asthma is bad I could go see, I could go book an appointment to my asthma doctor, but because he’s that level, like, you need a referral and also the stuff, like, he only works, like, one day a week, or something like that. I already feel like the reason why I see that doctor, at [hospital name], is because he has an action plan. For the most part, I’ve just been able to do that. So the only reason I’ll see a GP is if I need a script.
Specialist clinics were seen as the places where blood tests and lung function tests would be performed. Some people with severe asthma mentioned “rapid access” or similar services, which are set up to fast track people with severe asthma. This concept was viewed favourably by people in the study, as there would be healthcare professionals available with specific expertise in severe asthma.
Patsy isn’t exactly sure what the tests are for.
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Well the doctor doesn’t really do much. He relies on the specialist I think and she usually gives me a lung function test and sometimes she does blood tests and just chats to me about how my life’s been going and stuff. But the things she does medically is give me the lung function test and some blood tests usually. I don’t know what the blood tests are for but I think she’s testing what’s… because she wants to get me on a trial if she can, if one comes up, so she keeps an eye on to see if I’m healthy enough to go on the trial. But I missed out on one because I wasn’t.
John G feels people with severe asthma must go to a specialist clinic.
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It’s only recently, and I mean really recently that asthma has been fully understood by GPs in the fact that the service the GP gives is they give you medications that they know about. Really to get the full service of what is available you need to go to a specialist clinic. You must, really if you are severe asthmatic, you have to go to a specialist clinic because they have the most up to date medications, they have medications that the GPs have just not heard of.
Ed is familiar with a specialised service.
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Look that type of thing in another name is available through the [location] GP clinic as a family health service I think it’s called. They’ve got a triage nurse, and they involve, on the last visit anyway, a doctor who had extensive experience in an emergency department in a hospital. They had a bed set at the back. This is not normal. They had consult rooms, they’ve got a separate section, and they had nurses that were fairly knowledgeable on asthma and directed by doctors who were obviously well experienced in all kinds of threatening diseases. So, I think it’s possibly similar to what you were talking about. I see it as, it’s very important to retain. I wasn’t aware of it until I visited them fairly recently, expecting to be hospitalized. I think some of the assessment they did helped, make treatment more effective immediately.
From a medical perspective, the goals of treating a person with severe asthma are to lower their symptom burden and the risk of attacks, as well as to reduce the decline in lung function and treatment side-effects. [Reference: Severe Asthma Toolkit] Up to the middle of the twentieth century asthma treatment consisted mostly of medicines that opened up the airways, and other types of medicines to treat symptoms. For some people we interviewed, the treatment was seen as being as bad as the asthma itself.
Marg didn’t enjoy her treatment.
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They would take me to the doctors in a hurry and he would give me an injection and from what I remember it was adrenaline. Because my heart would go bang, bang, bang, bang, bang and it would drive me mad, you know this racing heart, feeling really edgy and it was like something was wrong all the time. So I didn’t like it happening, I didn’t like getting asthma and I didn’t like the treatment.
From the late 1950s steroids were used, firstly by mouth and then as inhaled versions. [Ramsahai et al 2018]. Steroids are effective at reducing inflammation, which is known to contribute to asthma, but also have side effects. For many people with asthma, optimal therapy as per Australian guidelines is high dose inhaled steroids and long acting beta2 agonists, together with attention to inhaler technique and adherence. If this is not effective, then oral steroids may be required. See Managing Medications.
Medication has changed
Diana’s life.
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You know, I haven’t been very adventurous with new medications. Because you sort of get into a rut with it all. I guess I should. I’m due to see my specialist again soon, so maybe he’ll have some new ideas for me. I mean, it’s great. There’s been things in my life that have changed dramatically because of some of the medications I’ve had. Really amazing. Huge changes for me. And it’s great for my husband too, because he benefits from my health being better too.
Marion explains the impact of inhaled steroids on her family’s quality of life.
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My sister in particular next to me was always, you know, sickly and wheezing and wouldn’t eat, and all that sort of stuff. But their live; my mum said my father’s life also changed when they brought in the inhaled steroids. You know, like that really made a big difference for them. And so my… I don’t think… like my brother’s been hospitalised with asthma a couple of times but not since I don’t think since those drugs came around. So they, you know, like they manage their asthma no problems. I’m the problem now.
People with severe asthma often continue to experience poor asthma control and many flare-ups despite the use of oral steroids; they may be resistant to oral steroids. In these patients other medications can be tried such as long acting muscarinic agents, leukotriene blockers, theophylline or macrolide antibiotics. [Upham et al 2018]. Occasionally people we interviewed mentioned trials of such medications.
Michael was given a macrolide antibiotic called azithromycin.
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It was a study of how you reacted to different pollutants and different smells and triggers for asthma, but you were also given a drug, actually which was called azithromycin which actually is an inflammatory which was meant to work on your lungs. I was on that study for 12 months and the study only recently finished and I was not on the placebo, I was on the drug.
Karen finds theophylline is the only thing that works for her twitchiness.
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I actually kind of have a love affair with theophylline, it’s my… it is the one drug that I kind of love and beg for at times. Well I always take the tablet form, the oral form, so I always take theophylline. And then I often beg for the aminophyllin in the infusions. Because that’s the one that kind of settles the twitchiness, that I can sort of tell that’s coming on. And that’s the part of my asthma we have most trouble controlling. So the theophylline gives you again really bad reflux, and it really interferes with your sleep. It’s like it’s related to caffeine. So I used to take 300 mgs morning and night, and I was still having trouble. I can kind of get to a point where my asthma control is reasonable during the day, but still blows out at night. And it’s like I have this thing I call witching hour where I kind of wake up at 2:00 in the morning, and I’m just done ’till about 5:00.
For some people with severe asthma a group of biological medications called monoclonal antibodies that target molecular pathways contributing to asthma are available. The medication with the longest history of use in Australia is omalizumab (brand name ‘Xolair’). Although Xolair has been life-changing for many people with severe allergic asthma, some people with severe asthma didn’t feel they derived much benefit from it. Some people we interviewed were aware of other new biological medications available in Australia and hoped they might qualify for a trial of them.
Mick’s asthma didn’t improve on Xolair but his sinuses did.
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I was on the Xolair thing too program for a little while and that didn’t do much for me but it might do something for someone else who’s got the asthma. But it might be a different type of asthma I suppose. Like I said that Xolair we tried that, that was a new drug that come out. It was an injection actually so it didn’t sort of work too well. I mean it did alright actually, I think it worked on my sinuses.
Marea is hoping that new biological medication will decrease her treatment burden.
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I am hoping that maybe it’s been approved and I do qualify because I would just love maybe once a month to have injection and not have to take another other medication that would simplify everything and if I do get it through the public system well then that would probably not cost me anything.
Regarding treatment options other than medications, some patients with severe asthma may be suitable for a procedure called bronchial thermoplasty, where a tube is placed into a person’s airways, and heat is used to treat the smooth muscle.
Karen was treated with bronchial thermoplasty.
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So they actually put the bronchoscope down, and it has like a heat tip on it, so it’s not really burning but it’s a heat. And it actually will kind of damage some of the smooth muscle so that it can’t react as much. So they’ve been doing it in Britain for quite a while, they’ve even been doing it in the States for quite a while. But we’ve been really slow. Really slow, compared to the way we often pick up procedures. And the results have been… so it’s not good for all asthmatics. It is only good for a very small proportion of severe asthmatics who have that smooth muscle reactivity.
As part of overall severe asthma care, some people we interviewed talked about hydrotherapy, physiotherapy and exercise therapy. Some people with severe asthma found it difficult to do physical therapy consistently. One person we spoke to suggested that physios design separate programs so that the person can do it when at their worst or at their best. Access to physiotherapy in rural areas was a problem for some people in the study.
Karen can do a package of therapies through her health fund.
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So I’d been in rehab in the hospital, so I was doing hydrotherapy and physiotherapy, and exercise therapy, and some, there was mindfulness and all sorts of stuff. So once you’ve been there, there was the option then to follow that up with six, my Health Fund will give me six weeks of day rehab.
So I can go twice a week. So there was the option of physiotherapy, occupational therapy, exercise and hydrotherapy, you get three of them normally. I don’t really need occupational therapy. We went, on Tuesday I went, it was an assessment day. I’ve had so many O.T. consults that they just decided that I didn’t really need occupational therapy. So I’m doing one hour of physiotherapy, I’m doing a half an hour of exercise therapy, and a half an hour of hydrotherapy. So it’s hard work. You work. And I mean again it’s your choice as to how hard you work. My aim is to work.
Marion does exercises at the local hospital.
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And then my chest just started to fill up with this goo again and it’s like, almost like chewing gum. You know, it’s pretty disgusting and it’s very antisocial, but it’s very hard to get up and clear. So for years I have been nebulising salt water, and that helps quite a bit. You know the routine where I do that for 10 to 15 minutes in the morning, and I manage to do my physio size exercises when that is done and that helped. And then I’ve had a couple of goes at the, what do they call it? The thoracic gym,rehab gym at the local hospital where I go and do exercises and they pummel my chest and I’ve got more toys. I’ve got a little flutter pipe and I’ve got, now I’ve got a pet pipe.
Wayne could do breathing exercises but not the treadmill.
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And two years ago they sent me to Q Health, or something, it’s something to do with the physio through that. And I went to the physio there and all they did was breathing exercises because they put me on the treadmill and stopped it straight away and said, ‘no, you can’t do that’. So, because my blood pressure and heart rate and everything went up. Because that was the physio where they want like aerobic thingy and no, I couldn’t do it. Or they wouldn’t let me do it. So just stick to doing weights. And then they had me doing the breathing exercises. As long as you can breathe you’re alright.
References:
- Chung LP, Johnson P, Summers Q. Models of care for severe asthma: the role of primary care. Medical Journal of Australia 2018; 209 (2 Suppl)
- Severe Asthma toolkit. Available at https://toolkit.severeasthma.org.au
- Ramsahai JM, Wark PAB. Appropriate use of oral corticosteroids for severe asthma. Medical Journal of Australia 2018; 209 (2 Suppl)
- Upham JW, Chung LP. Optimising treatment for severe asthma. Medical Journal of Australia 2018; 209 (2 Suppl)
Links:
More information on assessment of lung function can be found at https://toolkit.severeasthma.org.au/diagnosis-assessment/lung-function-assessments/
