Table 5

Quotes supporting the theme ‘assessment issues’ of patient perceived remission

Assessment issues
Duration21UK2 G:Twenty-four hours for me!
22AT3 5:In order to feel it [that the disease is as good as gone] substantially and realise it, it must be ongoing for more than half a year.
23UK3 L:I would say 18 months, 2 years and then the champagne is opened!
UK3 I:A year.
UK3 J:Around about 2 years.
24AT1 3:Until one forgets to think about it [the disease].
Use of medication25NL1 2:Yes, I would like to step down and stop, because you are wondering about the side effects of those drugs. Like mood changes… Is that me or is that menopause or what?
26NL1 2:Last summer, my rheumatologist advised to step down. And within a month I had trouble with walking again. So no thank you. I hate it, MTX and prednisone. Hate it, but can't do without it apparently.
27AT3 1:Remission means for me freedom of symptoms and reduction of the medication.
Measure-ment28UK3 I:That's right. It's [patient global assessment] also how you're feeling.
UK3 L:
UK3 K:
Isn't it more to do with what you're capable of doing rather than how you're feeling. A combination maybe. I usually think what I can and can't do physically.
UK3 L:I think you're right, that your actual mental state is critical.
UK3 I:We're actually answering this in a … answering a different question really aren't we? You're saying how you feel mentally and I'm saying what it's stopping me doing, how far I can walk or whether I can …
29NL1 2:Yes, those measurements… It depends on when you see me. If I am cranky or short tempered… while my disease is on the same level, you will get different answers out of me.
30NL1 6:What you say, if you get up with the sun shining and all, you feel different then when it is raining…
Acceptable level31MOD:Okay. To go back to the pain idea, have you any thoughts about how much pain you could still have and say “Yes, I'm pretty good, I'm in remission, even though I've got a pain score of…”
UK1 A:4 I'd think might be the highest.
UK1 C:I'd go a bit higher than that … …because I'm used to it. I've been used to it for 20 years, so that helps with the pain. Well, you put it in the background.
UK1 B:Yes, you do, yes.
MOD:So where … how much higher than 4 would you go?
UK1 C:About 6 or 7. I'm about 6, 7 today, but … it's always there.
Discordance between patients and physicians31AT3 1:Well, according to the physicians it [the disease] shouldn't be active, but I still have complaints, let's say so. I don't feel that bad, but … the strength in my hands is deteriorating, so I have no strength in the hands.”
32UK2 G:I suppose in part though also if there was a medical measure for your disease being controlled or not. If they said “Oh well, you know, from a medical point of view, your RA is well controlled or in remission”, or whatever, then you still felt like complete rubbish, then wouldn't that then make them look at the other components to it?
  • MTX, methotrexate; RA, rheumatoid arthritis.