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Table 1 RA symptoms and impact concepts identified by literature review, and associated concept elicitation interview quotes

From: Development, psychometric evaluation and cognitive debriefing of the rheumatoid arthritis symptom and impact questionnaire (RASIQ)

Concept (literature review) Supporting participant quote (concept elicitation interviews)
Pain “It´s just a constant pain. I can´t say that it´s dull, because it´s more of an ache.”
Fatigue “I'm very fatigued. It's like there's a day where I want to fight it and go through it, but my body's saying you're just too tired, so if that makes sense.”
Sleep “I mean it´ll go to the point of me not sleeping because of the pain and the swelling and everything for two or three days before I sleep. I´ll be past the point of exhaustion probably.”
Energy “Yeah, it’s sort of the illness … sometimes, for whatever the reason, it’s as if you have been running a marathon, you’re tired, and very usually after 8 pm, I don’t have any energy.”
Stiffness “When I wake up in the morning … my joints are stiff initially.”
Mobility “Movement is … limited as far as time and how long I can endure something.”
Joint swelling “I experience kind of the swelling. It usually starts with swelling, and then it really gets kind of tender and, and feels a little bit warmer."
Tender joint “…tenderness, um, almost like a sharp pain.”
Muscle strength “I don’t feel that I have the strength in, in my right hand as well as I do [in] the left”
Physical function “I can’t lift any groceries or I can’t lift laundry. I can’t do none of that anymore. I don’t do none of that. I mean it’s impacting me tremendously”
Life enjoyment “It takes away your life of enjoyment with your family. You can’t stay out in parks a long time with them. You want to go to family gatherings, you want to go to amusement parks. Things like that I can’t do anymore. So it’s, it’s depressing. It’s hurting that I can’t be in the lives of my grandkids like I want to be because of my condition.”
Relationships “I'm scared to be with— just find somebody that, uh, you know, to get married—because I can't take care of anybody now”
Depression “When you’re living a painful life, you can’t be happy”
Well-being “Not being able to do things I like to do, not being able to focus. Basically, it's like I feel worthless”