Table 2

Quotes supporting the ‘symptom’ theme of patient-perceived remission

Less or no pain1MOD:So you all indicate that you should be free of pain, or close to free of pain, when in remission
NL1 3:Well, I would not say ‘close to’, but NO pain.
NL1 6:I agree, NO pain is remission.
NL1 3:But not close to or almost
2AT2 1:When the disease was as good as gone, I had absolutely no symptoms; I was strong, had absolutely no pain, no stiffness, nothing. But when it started again, it was quite bad, everything hurt, I couldn't walk, couldn't carry anything.
Less stiffness3NL2 2:…it is more a stiffness during the whole day. It's in all your movements. That's why I call myself, I'm not there yet, but I sometimes feel like a stiff elderly person. In moving, and stiffness and fine motor skills. So when you squat, and you have to grab all kind of things to get back up again. Well, that is... if you are still rather young, that's really not amusing.
4UK2 D:I was so much looser in my body [when the disease activity was gone]. There wasn't this sort of tightness or … I mean sometimes it feels to me like I've got a mild form of cramp all the time
Less fatigue/more energy5NL2 2:For me the stiffness and fatigue. That I would just have the energy, and I would even be prepared to put up with the pain... That is, except the real heavy pain attacks, but I rather have my energy back and that overall feeling of stiffness... I would be happy then.
6UK2 D:I mean I have this heavy aching all over despite the medication, and being very tired a lot of the time and I can't imagine … I mean that would be perfect for me if all that disappeared completely, but I don't think that will ever happen.
Less swelling7UK1 C:[….] I haven't had any swelling to talk of, what I would call swelling, for the last two years. I get flare ups, like the other day, my elbow was absolutely killing me, but that's what you get, you get that … or your wrist is absolutely a pain like, all day long, and then the next day it's gone, it comes and goes, itdoes that all the time.
MOD:So is swelling an important part of … ?
UK1 C:Massive.
UK1 A:God, yes, definitely.
More strength8NL3 1:Not so much the fatigue, for me it was the strength. When the disease was at its heaviest, that was only in the beginning. I had no strength in my hands. Couldn't do a thing. I had two young daughters back then. Had to do their hair. I just couldn't.
MOD:Because of the pain? or not pain but, ...?
NL3 1:Pain, and strength.
Better sleep9NL2:The pain and with that the fatigue and the not sleeping at night. I have had functioning problems at work, just because I didn't sleep properly at night. So he [rheumatologist] gave me something to suppress the inflammation and sleep better. And then you become so much more fit. Many symptoms disappear. Everything is easier.
10AT3 2:And as the lady said it is the mind, and that includes everything. Because when I have extreme pain, then I cannot sleep, then I am not well rested, then I am tired and listless … so that I doze off constantly and anyhow I cannot sleep. And that is really unpleasant.