Tables
- TABLE 1
Participant demographics
Subjects 25# Age years 54 (23–81) Female/male 68/32 Smoking status current/past/none 0/64/36 Living alone or with children/with partner or other adult 20/80 Living in a socially disadvantaged area¶ 48 Living in a regional location, outside a major city+ 16 Age asthma diagnosed years 17 (1–50) Daily prescribed inhaled corticosteroid dose µg§ 1600 (1200, 2400) Also prescribed omalizumab 32 Asthma Control Test scoreƒ 16 (12, 19) One or more hospital admissions in last 12 months 36 Data are presented as n, median (range), % or median (upper, lower quartile). #: living in state: New South Wales/Australian Capital Territory 44%, Victoria 20%, Queensland 12%, South Australia 8%, Western Australia 8%, Tasmania 8% (32% AustralAsian Severe Asthma Network-referred); ¶: socioeconomic indices for area quintile ≤3 [26]; +: only 10% of Australians live outside major cities [27]; §: beclomethasone dipropionate equivalent; ƒ: Asthma Control Test scores reflect asthma symptom control over the previous 4 weeks, classified as: 5–15=very poorly controlled, 16–19=not well controlled and 20–25=well controlled [14] (the range of scores in this sample was 7–23; all participants satisfied the European Respiratory Society/American Thoracic Society Task Force criteria for severe refractory asthma [1]).
- TABLE 2
Theme 1: “The body as a hindrance”
Personal hindrances Physical “Most housework I can't do. Can't vacuum, I can't do the bathroom or anything like that.” (Nancy, female, 51 years) Spontaneity “Running around the oval after my little boy. I have to stop, take some medication, give it 5 minutes, then chase him. I can't just go ‘Let's go now!’ you know.” (Stephanie, female, 38 years) Independence “[I'd like to] enjoy my day, being able to do the things I can't do, and not having to depend on anybody.” (Katherine, female, 59 years) Interpersonal hindrances Socialising “People are offended if you say you can't come to a dinner … I guess it's fair to say there's some friends who won't ask me to things [anymore].” (Paul, male, 62 years) Relationships “He loves camping but I can't go where you can't get phone reception. And the sex [is unattractive due to shortness of breath] … And yeah that relationship, it's gone to crap [sic].” (Casey, female, 48 years) Parenting “When my kids were young I really couldn't play with them all that much.” (Larry, male, 54 years) Extrapersonal hindrances Career choice “I was knocked back [from nursing] due to my asthma. And that would probably have been the hardest thing because it was the only thing I had ever wanted to do.” (Nancy, female, 51 years) Career discontinuation “There comes a point where you can't do the job anymore so you've got to get out of there and let someone else do the job.” (Larry, male, 54 years) Emotional distress “It's frustrating, upsetting. There's things I really wanted to do and I haven't been able to do … It does make you depressed, because people don't see the sickness that has happened over my life.” (Brenda, female, 53 years) “On some occasions the mind's there and wants to do it but the body can't keep up … and it sort of makes you feel worthless in a way.” (Neil, male, 60 years) - TABLE 3
Theme 2: “Burden of treatment”
Ambivalence about treatment-taking Accepting it “Well, you'd probably be better never taking anything but that doesn't work. So if I need to take it I take it … If you don't you'll end up being quite sick and you'll end up in hospital so you don't really have much choice.” (Linda, female, 65 years) Disliking reliance on it “I mean having to be reliant to take the medication [is something I'd like to change]. I mean number one it's reasonably expensive … I suppose the fact is I've just accepted that it's one of those things, but it would be nice not to have to take anything … it's a lack of freedom I suppose.” (Cynthia, female, 51 years) Time-consuming “Well I know they work but really, it takes so much time to take it all. You just wish that [medicines] were combined ((laughs)). You know, if, even just two of the sprays, if they could just combine those and then the other two combined as well … I don't know, I'd just be a freer agent I guess.” (Jacinta, female, 63 years) Oral corticosteroid adverse effects Concern about future severe side-effects “I'm thinking I'm probably going to get side-effects from the cortisone. The worst thing is you know, you get osteoporosis and I can just fall over or something and break a hip.” (Pamela, female, 60 years) Concern about very severe side-effects “I've just been diagnosed with Addison's disease recently which is my adrenal glands have shut down. So that's from the use of steroids … Addison's disease is like, it's all your hormones in your body and, like it can cause you to have inflamed joints. They did say that because of the Addison's my appendix is flared up and I've just had [it] removed just 2 weeks ago. So you don't have that ability to fight things, infections. If I cut myself, wound healing takes a lot longer … I get quite fatigued and all that sort of thing.” (Brenda, female, 53 years) Concern about changes to physical appearance “I just came off the prednisone and the pictures are not flattering. I'm embarrassed [about the weight gain] ‘cos I can see that I'm so puffy.” (Rebecca, female, 45 years) - TABLE 4
Theme 3: “Alone with asthma”
Being misunderstood Confusing severe asthma with fixable milder asthma “You have all these ads on telly with wonderful Australian cricketers that play world class cricket, and they take their puffer. ‘We have asthma but we can do anything' … [People think] ‘So why can't you do that?'.” (Pamela, female, 60 years) Resentful partners “He's resentful of it. Sometimes I wonder if he really thinks I'm that sick at all, and I know he doesn't understand.” (Stephanie, female, 38 years) Emotional distress “I have struggled with [depression] personally when I have been so, so sick, and I probably struggle with it every day now that I live alone. It's harder ((becomes emotional)).” (Rhonda, female, 54 years) General public education to address misconceptions “I think it needs a bit more publicity. Because when you say to people ‘I've got severe asthma’ I think 90% of the population goes ‘Oh yeah, asthma. Every second person has that.’ I don't think there's a comprehension there. And you don't want it as a sob story, but there needs to be that acknowledgement that people with severe asthma are [not mild] asthmatics.” (Stephanie, female, 38 years) Stigma and disclosure Insensitive comments “I went to a musical with a friend … she turned to me and said ‘How on earth did you hear any of that? You were wheezing louder than the choir’ … I felt ‘Gee, well, where do I fit in? Where is my place? Where am I supposed to be?’.” (Rhonda, female, 54 years) Concealing asthma “I don't want to be specialised at all in their eyes, or treated in any different way because I've got asthma.” (Steven, male, 71 years) Disrupted identity or self-concept Dissociative thoughts “[Asthma] isolates you because inside there's an emptiness or a difficulty with trying to balance with who you really are and what you need to be … It's like trying to avoid yourself while maintaining some sense of self.” (Rhonda, female, 54 years) Alone with exacerbations Panic, fear and anticipation of death “Suffocation. Can't breathe. Dying. No other way to put it … Trying to control my breathing, panicking at the same time because I can't breathe and [thinking] am I going to see the night through?” (Neil, male, 60 years) Use of cognitive breathing/ relaxation strategies “Even if I have to lay on the bed and just settle, relax, try and breathe, and get it out of my head that it's my last breath because that's what panics you.” (Joan, female, 52 years) Habituation/poor perception of symptoms “I can cope quite well with very little output if you know what I mean. So you adjust to that level. And you don't really realise how bad [your asthma] is until someone points it out to you.” (Stephanie, female, 38 years) Family member's trauma “I think it has changed the way [my son] has turned out because he's sort of a bit of an anxious character now because he saw some terrible things happening to me and he panicked and thought you know, ‘I'm going to lose my mum’.” (Jacinta, female, 63 years) - TABLE 5
Theme 4: “Striving to adapt”
Adjustment to life with severe asthma Good adjustment “Asthma doesn't dominate my lifestyle. It's part of who I am.” (Paul, male, 62 years) Poor adjustment “[It's] crap [sic] … [asthma] affects every hour of every day of every week of every month of every year of my life.” (Stephanie, female, 38 years) Positive coping strategies Acquiring self-management skills “It wasn't really until I had a full asthma plan working closely with a specialist, which is now many years ago, that I was actually able to get all those things under control.” (Paul, male, 62 years) Managing emotional problems “Stop wallowing in self-pity basically … Try and camouflage it with something else … Like I might go out. Get out and walk the streets, and look in shop windows.” (Larry, male, 54 years) Switching to doable activities “I do exercise with people who know my limitations and they don't care if I stop or whatever … Yeah, I don't make myself do [things] that make me really wheezy … I just don't put myself with those people that run their 42 km marathon because I know I couldn't do something like that.” (Cheryl, female, 53 years) Negative coping strategies Pushing through “Being in a state where I probably should've been in hospital because my lung function was that bad … having to get it done [at work] because the guy standing next to you is perfectly healthy … and you've got to keep up with him.” (Larry, male, 54 years) Risk aversion/exertion restriction “Like this morning I had to go to the eye specialist … which is not far, over the road actually. I thought ‘Will I walk? No I'll drive because I might get out of breath’.” (Gloria, female, 81 years) Vigilant monitoring of symptoms “I am so in control of my asthma now. I do not let myself have an attack. If I get the slightest inkling that something's happening, I am onto that nebuliser like you wouldn't believe!” (Jacinta, female, 63 years) Childhood experiences “I avoid doctors like the plague. Because I've seen so many of them I guess. When I was a kid, every time I saw a doctor they'd whack me in hospital. So maybe that's got something to do with it.” (Jacinta, female, 63 years) - TABLE 6
Public messaging content on severe asthma suggested by interviewees
Messages for first responders Inform about quick deterioration in severe asthma Advise about first aid, e.g. sit calmly with the patient for a bit, help them with what they need (e.g. assist with their inhaler), call an ambulance (check first with patient if possible) People with severe asthma may need help to decide when to go to hospital Messages for people with severe asthma It's not normal to be symptomatic – see your GP You should have a plan from your doctor of what to do when symptoms worsen Never ignore your symptoms – accept them and know you can take steps to make it okay Messages for the general public Bring people's attention to how debilitating severe asthma is Severe asthma is not fixed with a blue puffer Severe asthma has long-term consequences and its treatment can have added complications (e.g. heart irregularity/hip problems) Sources suggested by participants included social media, television and print media.
Supplementary Materials
Supplementary Material
Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.
Supplementary material ERJ-00765-2017_Supplement
Supplementary Material
J.M. Foster ERJ-00765-2017_Foster
V.M. McDonald ERJ-00765-2017_McDonald
H.K. Reddel ERJ-00765-2017_Reddel
Vol 50 Issue 3
Table of Contents
“I have lost in every facet of my life”: the hidden burden of severe asthma
