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Table 3 Descriptions of fatigue

From: The patient experience with fatigue and content validity of a measure to assess fatigue severity: qualitative research in patients with ankylosing spondylitis (AS)

Exemplary participant quotes from concept elicitation interviews

Topic

Quote

Description of fatigue

“I do things at the same pace, but I run out of energy more quickly, which means I do a lot less things. Whereas in the beginning of the day I might be able to grab some laundry on the way and drop something off in this room and then, you know, stop and do this and stop and do that. By the end of the day it’s – the tasks are chosen carefully and they’re completed with no zest, no, it’s just done. …there’s a pretty moderate level of fatigue that I deal with. I used to have energy to go from morning till night and get everything done. Now by 5 or 6 pm I’m – at 5 or 6pm I’m basically useless…”

 

“… feel tired all the time.”

 

“… I feel like my life is in slow motion because I have to do everything so slow and take rest times.”

 

“Once Saturday gets here, I am just wiped out. … I don’t do too much of anything on Saturdays. I mean, I just, I can’t. I sleep. …”

 

“I’ve been feeling run down.”

 

“It’s hard for me to concentrate; it’s hard for me to focus.”

Clarity and interpretation of concept of fatigue

“It’s a feeling of I’m so tired that I cannot function or anything or even think and it’s hard because there are things that I need to do.”

 

(Response to probe regarding 'fatigue’ and 'tired’). “I feel like the same, almost like the same.”

 

“I think fatigue, sometimes – well, fatigue to me sounds like it’s when you’re really tired, really, you know, really need to sit down or whatever.”

 

“Oh, I’m always exhausted.”

 

“Just – you just feel like you didn’t get a good night’s sleep and that if you have to lay down and take – to take naps, you know, to see if that would help and, nine times out of ten, I wake up just the same as I went to sleep. So it’s I can’t – I don’t really relax, I don’t think, really good 'cause I’m – you have to move around to get comfortable.”

Frequency and duration

“… the day when I feel more rested, on Monday, because as I say I feel like I charged my battery all weekend so I'm ready to work on Monday and as the week go on, like Tuesday morning a little bit more tired than Monday and then Wednesday, Thursday, Friday I'll finally – the last day of work, you know.”

 

“I’m better in the mornings as far as being fatigued. I don’t feel fatigued when I get up in the mornings. I feel fine.”

Fatigue and pain

“But then, like I said, I don't know the difference any more. Like, I can't remember the difference of what it's like to not be in pain, what it's like to not actually have fatigue. So, I don't know, honestly.”

 

“I think it’s that the pain kind of wears you down and I think it’s a cumulative thing.”

 

“Well, it's tough because barely I work my shift. I start early in the morning and when I done – like right now I just get off from work at 2.. as soon as I get off from work I get at my home and I do nothing 'cause I'm tired, I got pain all over my body. So, I don't want to do nothing more. I just – all I think is just get home and rest. That's all I want to know. I just want to rest.”

 

“… the tiredness and the pain seem to go together. When I start getting tired then my body starts aching more, you know…..”

Other factors associated with fatigue

“Yes, that’s a major thing. I – naps are good. I take naps all the time.”

 

“.. close my eyes, just sit there and let my body regenerate.”

 

“… I’ve been trying to get back on the treadmill … I was able to walk two miles last night and it took me about 38 minutes, which is not – I normally can go a little faster than that. .. I was very tired, but I felt better afterwards, …”

 

“… well, to me, the reason it’s not mentioned is that everybody gets tired. It’s something everybody complains about. Tired for one reason or another. And if you talk to someone else, like I talk to my friends about being tired, and then they’ll tell you how tired they are.”