The term ‘asthma control’ often has a different meaning for patients compared with its medical meaning. People with severe asthma in this study expressed what asthma control means to them, how they get their asthma under control, and how it feels emotionally if their asthma is not controlled. The most common response was that asthma control means being able to do the things they want to do—often what other people consider ‘normal activity’—and not be limited by symptoms. They spoke about being able to manage daily living, being on top of things and have a regular routine with no crises when their asthma is controlled. For Jemma controlling the asthma was about the ability to play and compete in international sport. For others, having their asthma controlled was essential if they were to consider travelling. Others equated control with an absence of infection, not needing to take oral steroids or seeing the specialist less often.
For
John B control means doing everything he wants to do.
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‘Well controlled’ means to me that if I haven’t got an infection or I’m not needing to take any prednisone or anything, that I’m breathing well, that I can do everything I want. And if I can do everything I want that’s what it means to me, because of my medication, my exercise and my diet. I would say mostly my medication. I think I’d be really, I would really go back to having asthma attacks again if I wasn’t on these medications and Xolair. But because I was on that I’ve got lung function that’s pretty good, and I can do everything I want to do. Even though I am a bit short of breath.
Joel feels things are controlled most of the time
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Asthma control means that you can go about your daily life in such a way that you can build a routine and if it’s controlled properly, you can actually go about every part of your daily life without having to go “oh, no, where’s this, where’s this, where’s that”? I feel like I’ve got probably …I feel like I have moderate asthma control. Yes, there are areas where I could improve, but I feel like I’ve got it under control probably 70% of the time.
For
Allen asthma control is a matter of life and death
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What does asthma control mean to me? Well it means saving your life. It’s as simple as that. If you’ve got it under control you’re not restricted in what you can do, you know that you’re not going to have to call an ambulance, and you know you mightn’t end up in a pine box. It’s the be all and end all isn’t it?
To healthcare providers good asthma control has two domains: it means good asthma symptom control, i.e. no limitation of activities, no symptoms during the night or on waking, daytime symptoms no more than 2 days per week, and no need for reliever more than 2 days per week, as well as having few or no flare-ups and no or minimal side-effects of treatment. However people living with severe asthma often experience poor symptom control, multiple flare ups and frequent need for steroid tablets despite being treated with what is considered optimal therapy [Reference: Upham and Chung].
During periods of good symptom control, people we interviewed said they tended to forget about the possibility of attacks. They also feared the uncertainty that comes with going from a stable situation to worsening asthma, not knowing if and when a severe attack might happen.
Marion explains about the uncertainty of life moving forward.
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I thought I was travelling along with a reasonably well managed and, you know, at a point where I could live with it sort of thing. But now we know that’s not the case, and that I don’t know, you know, if it’s just going to continue going up and down like this every couple of months or whether it will get to point where it can get stable and reasonably well managed and go back to just, you know, being a catastrophe every couple of years or something. You know like I’m yet to find that out, really.
Methods used by people in our study to feel that they had their asthma under control and keep it that way included constant vigilance, good preparation and planning—which involved avoiding triggers and risky situations, having a written asthma action plan and taking their preventer medication. They didn’t see that they had a choice about taking medication if they wanted to keep their asthma under control.
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But the last ten years it’s been under good control, I reckon since about 2000. Mid 1980s I was only half hearted, you know. It was all that good, or all that sort of useful for me, but I learned the hard way that it does work. You’ve got to take the preventatives, and you’ve got to do it religiously, like every day. Every day, morning and night, morning and night. And I’ve got about eight, nine months’ supply of all those medications inside there, you know. I’ve got them all there. I keep stocking up, just to be sure. When I go away on holidays, I always make sure I take lots of medication, more than I need, you know. I’ve got the pill box, and I take another pill box just to be sure. And yeah, it’s just a funny way of living. Yeah.
After one bad episode
Mick is vigilant and uses an asthma action plan.
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I was watching the golf on TV, the Masters, and I thought oh I’m getting bad here. I thought I was really, chest was really tight. I thought oh I better ring an ambulance. So anyway so the ambulance people come and where I was living I said it’s a steep climb down to the whatsaname. I walked down there and they put me into the back of the ambulance and they put the mask on me and I freaked out. I just sort of got claustrophobic and bang I was out of it for five days. I was in I.C.U., didn’t wake up. That was Monday, I woke up on the Friday. Anyway so that was the worst. And after that I’ve just sort of been going by the book on the medication and stuff like that so… and ever since then I’ve sort of been controlling it.
Denise doesn’t see any choice but to have asthma under control.
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Just keep everything in control, under control. That’s the most important thing, have your medication there, have it handy, know what to do, know how to use it, and when to use it. To me that’s the most important, you can’t just be lackadaisical with things, you’ve got to take them when you’re supposed to, to keep things under control. And once you’ve got things under control it’s pretty alright.
Despite their best efforts, not everyone felt they were able to keep their asthma under control, and this led to feelings of fear and depression, and that the asthma was controlling them.
Kim feels she has no control over her asthma
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None, absolutely none. I don’t know what it’s going to do to me. I don’t know when it’s going to do it. I’m good now. You could leave in an hour and [carer’s name] could be sitting here talking to me and then I’ll go and say OK I’ll go in there, I need a rest and then I’d be gone. I go into bed of a night and we’ve sat out here and laughed and they haven’t needed this, this is – actually this is more of a safety for me at the moment because I’m talking so I’m thinking I need that to prevent later. We don’t know, we just don’t know and there’s no triggers there’s nothing, just my body decides it’s going to happen it’s going to happen and apparently, it’s now decided if it’s going to happen it’s going to happen quick but I don’t get a proper indication on it anymore. Like you know, like I said I could spend an hour or so and I could bring myself out of it. I can’t do that anymore, it’s just yeah. When I start to really struggle, I don’t know whether you’ve ever seen an exasperation [sic] but [carer’s name] seen enough to know and he can tell if I’m doing it.
Karen has been unable to control her asthma since the onset of a viral infection.
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The last four now have been the worst ever. And triggered by one virus. I mean I was on a little bit of a decline, but one virus, someone came back to work, came in to work with one virus that they’d brought back from Thailand and yeah, I walked out in to the kitchen, took one look at him and went, why are you here? You could just see how glazed he was, the temperature. And I went, go home. He’s like, no, I don’t have any sick pay or holiday pay. We’re going, we don’t care, go home. And we went through the building, we wiped down every door handle, everything that we thought he touched, every door knob, light switch, desk top. He’d only been in the building 20 minutes, every staff member got sick, and for at least two weeks. And I got a bout of pneumonia and have been sick for four years. We just can’t get my asthma under control at all. It’s completely unstable now.
Shannon finds the lack of control scary.
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It’s got control over me. I don’t have control over it whatsoever. I think that I do, and I do everything right, I do all the medications that they want me to do that they just… it’s scaring me now at least this time because it’s coming to winter, and as soon as it comes to winter, I’m scared and you know it seems to flare up more when it comes to winter time.
References:
- Upham JW, Chung LP. Optimising treatment for severe asthma. Med J Aust 2018; 209 (2): S22-S27.
