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