Introduction
Methods
Initial cohort
Patient selection for the focus group interviews
General question
|
What makes you say that your disease activity is high, while the rheumatologist indicates that the disease activity is low? |
Additional questions
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What do you do when your disease activity is high? |
Was your intervention effective? |
Do you believe there are influencing factors that can reduce your disease activity? |
Data analysis
Findings
Group 1 (n = 7) | Group 2 (n = 8) | Group 3 (n = 8) | Group 4 (n = 6) | Overall 1–4 (n = 29) | |
---|---|---|---|---|---|
Female (no.) | 5 | 5 | 7 | 6 | 23 |
Duration RA, years mean (IQR) | 8 | 15.4 | 16.7 | 9 | 12.3 (4–10) |
Erosive disease (no.) | 1 | 4 | 4 | 4 | 13 |
Medication | |||||
DMARD use (no.) | 7 | 7 | 7 | 5 | 26 |
Biological use (no.) | 2 | 6 | 3 | 3 | 14 |
Age, years (mean, SD) | 57.5 | 56.1 | 58.7 | 55.2 | 56.8 (8.9) |
VAS fatigue 0–100 (mean, SD) | 67 (12.8) | ||||
HAQ, 0–3 (mean, SD) | 1.1 (0.6) | ||||
RADAI, 0–10 (mean, SD) | 2.7 (1.8) |
Theme 1 perceived stress
Stress is also a big wrongdoer. And I have experienced a lot of stress for several years; and you do notice this, that it has a negative effect on everything, particularly the pain. (P2,FG4)
Do you not also think that stress, unexpected events can have an influence on this? In my case they do. Like, for instance, the physical examination for my work is a very bad time for me, I feel that in my joints and everything. Because it’s on your mind a lot more. What will be the consequences, how will my employer react to this, how will I cope at home, how will I cope financially, so…. (P5,FG2)
Being sent from pillar to post was very stressful for me (P8 FG2)
Theme 2 balancing activities and rest
You have to find the right balance, and no-one can tell you what the right balance is between physical strain and relaxation (P4, FG2),
And a day like today, I couldn’t plan this on time, so for me this is actually already too much. I just know: tomorrow I’ll be ill. (P3FG2)
To exceed your limits, because either you can’t do it any other way or you don’t want to do it any other way. And that causes more problems the days after. (P4,FG1)
This not only changed their behavior but also made them feel that they were not able to do what “normal” people are capable of.It is an obstacle that you don’t do things just because you know they will cause you pain later. (P6,FG1)
Theme 3 medication intake
Get tired because of all those medicines. (P1,FG1)
At some point I really felt like a walking chemical factory.Can you imagine: every week you inject MTX, you take proton pump inhibitors, Naproxen, Arava, an anti-malaria drug, and I was injected with boosts of prednisone. If you still manage to feel OK after that… terrible. (P2,FG4)
Theme 4 social stress
I can’t shake hands, I usually explain why. The common reaction of people is: It can’t be that bad, I don’t see anything (P2,FG3)
I am being misunderstood by people around me; they keep asking: Have you still not recovered yet? I noticed that being misunderstood also causes me a lot of stress. (P4,FG2)
Theme 5 relationship with professionals
If you leave the consultation room feeling badly, this will really affect you a lot. (P7,FG1)
Well, actually, it is not enough just to treat the illness; you have to treat the patient. And this patient is more than just that illness. (P2,FG2)
Theme 6 comorbidity
And osteoarthritis is also very painful. And that also confuses me, when they ask: are your joints painful? Well, yes, they always hurt. (P6,FG 4)
And menopause, that I have to open the windows, and then you’re still exhausted because it’s early in the morning and you’re still waking up. (P5, FG1)
Theme 7 physical fitness
So when I sit down I get more overall complaints from my body; you become drowsy, you become tired. But when you move, your back doesn’t hurt as much, your hips don’t hurt as much, and so on (P5, FG 3)Becoming unfit, that might worsen the illness. Well, worsen, maybe you just experience a symptom sooner (P6,FG1)
If you exercise more, you get more energy. Well, it turned out to be so exhausting that I had to stop doing other things I liked. And it certainly didn’t give me more energy, so…it doesn’t help (P4,FG2).