Introduction
Methods
Thematic analysis
Results
Gender | Age (years) | Interview location GP/Keele | Number of attacks in last 12 months | Taking allopurinol |
---|---|---|---|---|
F | 76 | GP | 5 | Yes |
M | 75 | Keele | 5 | No |
M | 73 | GP | 2 | No |
M | 55 | Keele | 3 | Yes |
M | 67 | Keele | 1 | No |
M | 68 | Keele | 3 | Yes |
M | 85 | Keele | 3 | No |
M | 77 | Keele | 2 | Yes |
M | 72 | GP | 2 | Yes |
M | 81 | Keele | 3 | Yes |
M | 68 | Keele | 2 | Yes |
M | 64 | Keele | 2 | No |
M | 64 | Keele | 2 | Yes |
M | 78 | Keele | 3 | Yes |
M | 60 | Keele | 4 | No |
M | 63 | Keele | 3 | Yes |
M | 75 | Keele | 5 | No |
F | Unknown | Keele | NA | NA |
Higher order theme | Sub-theme | Quotations within transcripts |
---|---|---|
Gout characteristics | The impact of gout attacks | I mean a toe is relatively innocuous, if you’ve got it in your knees or hips or something, then yeah, it’s a little more worrying |
So I can’t really go anywhere or do anything in that sense | ||
You’re so bored sat there not being able to move your foot, [laughter] that you get psychological side effects. | ||
I’ll get into freezing cold water and sit there. [yeah] I take that pain to take that off | ||
You can’t turn over, when you’re half asleep, you accidently touch something. You’re frightened that she’s going to touch it | ||
But mine lies all over my body, everywhere. From one to another. [right] All down one side, well everywhere | ||
You really bang your head against the wall | ||
It gets that painful I’ll cry. I can’t get rid of it. | ||
If it breaks, [yeah] you go to the hospital, put it in plaster, and you’re—a bit of a throbbing and it’s gone, but with gout it’s bang, bang, bang for days and days | ||
Unpredictable nature of attacks | The only reason that erm I went back this time to—to see about it was the fact that I was a little bit frightened if I was going to go on holiday the next day it was going to clobber me that day | |
It’s the unpredictability of it, you know, you make a plan to, I don’t know, maybe go to theatre in five weeks’ time and when it gets closer you think god, I hope I don’t get gout just the night before | ||
Lifestyle modification | Well I couldn’t get my shoe on, last—a week ago since my last one | |
When I found out it was gout I changed my lifestyle and stopped drinking | ||
I have cherries. And I have seeds sometimes, celery seeds | ||
Because the damp weather, the cold and damp weather, is just not helping him at all. And they moved, they sold up and they moved to warmer climates | ||
I stopped doing these high impact erm exercises, I stopped long distance walking, because it was painful | ||
Like it’s office work now, like you know a desk job now | ||
Well we can’t go out and do the same things | ||
I could go out and leave him. [right, yeah] But there’s no way I would. [okay] So it does have an effect on the whole unit | ||
I’m a long distance runner, so when I can’t run like I hate it. |
Higher order theme | Sub-theme | Quotations within transcripts |
---|---|---|
Understanding of gout | Over-indulgence and dietary modifications | Yeah I know I kind of guess when I might be getting one, [yeah] by the fact that I’ve over indulged somewhere. |
Oh they put everything on there. What am I going to eat? You have to take it with a pinch of salt. | ||
When I looked onto NHS Direct, after I’d got it, that frightens the life out of you if you do anything because you get five pages | ||
It’s just a great muddle about when it comes to food | ||
Give them a 12-month diary or something like that. [right] And write each day what they’ve done that day. [okay] What they’ve drunk that day. What they’ve eaten that day. [yeah] And do a research programme like that and maybe you could come up with some facts | ||
Gout not a disease but natural | For me, disease is something like malaria and erm… But it isn’t is it, it’s just a build-up of stuff that’s naturally in your body | |
I suppose I was a bit in self-denial, I don’t suffer from gout | ||
There’s more people than what we think who get it a bit, not coming forward and saying this is a bigger serious problem | ||
In fact I would put it down to aches and pains getting aged really rather than anything | ||
Gout considered humorous by others and only understood by close family and friends | I think there’s certain diseases that are quite humorous to—and they’re not, but they’re humorous to everybody else who hasn’t got them | |
You don’t brag about it do you? | ||
Straightaway it’s with the well-off people and [that’s right, yeah] and the rich food. | ||
It’s this thing erm…they don’t realise what it is and they just use the old wives’ tale, the port and pheasant, rich living | ||
It happens so quick, people just don’t believe it. | ||
When you’ve got gout your partner or friend or whatever, if they see you with gout when it’s bad, they suddenly realise how bad it is | ||
I don’t think it’s perceived to be life threatening, whereas cancer and heart attacks are | ||
They should spend more money on stuff which we ain’t brought this on ourselves, [yeah] it’s because it’s an illness, it’s—whatever it is, we’ve got with us, whereas drugs and—they’ll spend money | ||
Lack of information from health care practitioner | I found out for myself basically. [okay] So the doctor didn’t really explain it that well | |
We’ve all got ignorance of it. Doctors don’t sort of explain exactly what it is | ||
I’d like to know the side effects though, properly [yeah] from a doctor, and not from the internet | ||
No, you go in, you go in, you’re the doctor, how much do you drink? I said I don’t drink doctor. But as I say it’s still treated as a bit of a thing, you know. I think doctors do actually. You know, you’ve been drinking. How much do you drink? | ||
“I would say my GP almost dismissed my view that [yeah] the attacks were brought on when I stressed the joint, but on the NHS site, definitely it states [yeah] that if you stress a joint it can instigate the gout” | ||
“But you couldn’t talk to my doctor about it, he wasn’t interested” |
Higher order theme | Sub-theme | Quotations within transcripts |
---|---|---|
Lack of contact with HCP | A female participant reported that her general practitioner (GP) was reluctant to refer her to a specialist even when her gout was sub-optimally controlled | |
Treatment | Have a supply if I can feel it coming on, because I’ve got a spare box at home | |
I dropped it down myself to one a day, I don’t know what the doctor will say when I tell him | ||
So it takes three, like it can take five days to see my doctor. You know, so by the time I get in there it’ll probably have eased down a lot | ||
Reluctance to prescribe and take allopurinol | He says I wouldn’t really recommend it if you can get away with it, just come in if you start getting an attack | |
I find it quite manageable with anti-inflammatory tablets I take for it | ||
I said I’m not being funny here but can I have this one please because this one seems to be the new one, and much better. She didn’t offer it because it’s obviously more expensive | ||
I’m old enough now that another tablet for the rest of my life doesn’t make a lot of difference | ||
I find mine just goes quickly, so I’m tremendously happy, I wouldn’t want to be on long term Allopurinol, not because there’s anything wrong with it, or anything, or anything else, I’m very, very content with what I’ve got | ||
Concerns about side effects of treatment | Because of the other medication that he takes, the gout tablets don’t sit well | |
My kidney function, he always checks because I think it’s on the border line, so I think that might have been one of the reasons he was a little bit wary about erm prescribing Allopurinol | ||
And then you go—and then you get gout, it gives you gout. | ||
My medic said that Allopurinol can actually cause gout to flare up again. If I had any problems, any pain, [yeah] to stop taking it immediately. | ||
Benefits of treatment | You go two for I think it’s two months, I’ve forgotten now, [yes] and then you go to three, and then that is—that’s a miracle | |
Go to the doctors and get the pills… I wish he’d done it two years ago | ||
“Well I’m still eating mussels and king prawns and everything like that. The Allopurinol I suppose is to let you do that isn’t it?” |
Characteristics of gout
The physical and psychological impact of gout attacks
Unpredictable nature of attacks
Modification of environment and lifestyle
Understanding of gout
Over-indulgence as a cause for gout and dietary modifications
Gout not a disease
Gout considered humorous and only understood by close contacts
Lack of information from health care practitioners
Beliefs about treatment of gout
Lack of contact with health care practitioner
Reluctance to prescribe and take allopurinol
Concerns about side effects of treatment
Perceived benefits of treatment
Discussion
Strengths of the study
Limitations of the study
Implications for clinical practice and further research
Key messages
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HRQOL was impaired due to gout characteristics, lack of understanding and information about gout.
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Patients expressed a general preference for treatment of acute attacks of gout over lifelong ULT.
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Better patient (and physician) education is warranted to address these factors which perpetuate poor HRQOL.