Table 1 Selected patient quotes targeting PROMIS-PF item concepts

Are you able to go for a walk of at least 15 min?

101–004: I used to be a pretty athletic person and it got to the point where even just walking a block, by the end of that time it just got so sore and the stiffness kind of got in.

101–014: I’d like to do more walks. That isn’t going to happen, long distance walks or even for extended period of time.

101–017: If I walk, you know, if I do a lot of walking, say like I’m at the store with my kids or something and I get into the car just from walking and then sitting, it, it will swell up right then, right then and there.

Are you able to dress yourself, including tying shoelaces and buttoning up your clothes?

101–016: If I’m trying to put shoes on or put pants on, um, just bending that knee to get the pants on or the boots, just a little stiff with a little bit of pain.

101–017: Yeah I’m not wearing socks…in the winter time honestly I would have like my boyfriend, take my socks off for me, please. Yeah, so I mean, you know pretty much would help, you’re a child help me put them on. Can you help me put my socks on? Could you help me take ‘em off.

101–021: It’s easy to put on my sock on my right foot, always has been, but the left foot—I mean, I—I’d like reach up and bend my leg and put on my sock on my right foot, kind of with my leg crossed over my other knee, but as that hip was giving me trouble, I couldn’t lift up, and I still can’t because of the fake joint. I can’t put that leg over to—to reach and put the sock on, so I would have to try to prop it up on the bed and then reach over to get the sock on, so it was a—it was a more involved process to put the sock on the foot with the PVNS going on on that side of my body.

Does your health now limit you in going OUTSIDE the home, for example to shop or visit a doctor’s office?

101–011: I guess the worst part is, you know, if we do have to drive somewhere, um, I am not going to be able to go and do something right away if we, you know, once we get somewhere because it can take several hours until I’m really able to walk well if it gets bad.

101–017: If I do any walking, you know, grocery store, by the time I finish with the grocery store I’m pretty much, burning up I would say. I’m not as active as I used to be at one time, I—I’m just, my activity level has really been limited since all this came about.

101–019: I can’t do—I can’t do biking on a bicycle, I can’t go hiking, I can’t do anything that I used to do. I am just—going to the mall, I can’t even do that, it’s just—sorry. I tried to go to the mall twice and I—I just am in so much pain, I just have to leave.

Does your health now limit you in doing heavy work around the house like scrubbing floors, or lifting or moving heavy furniture?

101–001: I don’t do heavy household chores now because I can’t handle it pain wise because I have to have the energy for my daughter. So I conserve my energy and my pain. So I’m not doing that.

101–011: I definitely have more problems, especially doing yard work kind of things. Um, the heavier type stuff.

101–021: If I’m out mowing the yard, it’s—it’s a challenge as the old mower bag gets full of grass for me to push it. I definitely can’t push it as fast as I used to. I cannot finish the yard in 20–25 min. It takes me 45 now, and I think some of that has to do with the musculature around where that tumor was

Are you able to push open a heavy door?

101–004: Right before the surgery. I just wouldn’t do anything that required pushing or pulling.

101–019: Any pushing—pulling is very painful. It just feels like, like I know using that part of my leg it just is—it just can be so painful.

Are you able to carry a heavy object (over 10 pounds/5 kg)?

101–001: This morning I was on the fourth floor of the building and it had a false fire alarm, so I had to walk down four flights of stairs and walk back up four flights of stairs. …..It was very, very, very painful and I was carrying my daughter, which she weighs 25 pounds, so –

101–004: My daughter was young enough that she wanted to be held and carried and I couldn’t because it would shift my balance off so much that if I did have any sort of, you know, instability, I was terrified that I would drop her.

Does your health now limit you in doing moderate work around the house like vacuuming, sweeping floors or carrying in groceries?

101–002: My house is [number] square foot and I have to stop and I only have carpeting in – I have carpeting everywhere but two rooms, so I have to do it in sections. I can’t do it continuously. I have to stop and rest in between.

101–012: I knew it was happening a lot. I--actually after it healed about two weeks later it--I—that really showed me how much I was compensating because the little things like bending down in the grocery store to get a product off the lower shelf, um, and cleaning around the house. I just didn’t realize I was compensating for the knee.

101–014: Ah, like vacuuming. That doesn’t work too well because you plant yourself and you kind of twist to do that. At times like after surgeries and for quite some time, I will wear like my heavy duty boot which does not let me bend it. I ask other people to do it or I stand and plant myself and do more with like my arms instead of my legs. And I have compensated or get other people to do it.

Does your health now limit you in lifting or carrying groceries?

101–004: So, you know, even with grocery shopping, I really have to watch where my center of gravity is and, you know, again, pivoting on the bad leg, um, try to avoid doing that, especially carrying the extra weight of the groceries.

Are you able to go up and down stairs at a normal pace?

101–001: I have a pretty hard time going down stairs…. And, I mean, just going down just a couple stairs gives me difficulty because if my pain is enough, I have to take one like just one stair at a time, you know what I mean?.... I do have difficulty going up the stairs. Um, unless I have a rail to hang onto, and then maybe it would be a little lower.

101–008: I can climb them and I can climb them one foot after the other, but I can feel the pain in the knee when I do that…. Stairs are probably one of the things where I notice it a lot.

101–019: I’ve been trying to walk up and down the stairs like, you know, like normal. You know, like you go your left foot, then your right foot – that kind of thing, instead of just going one leg, one leg, one leg, up and down. And going down has the tendency to uh—I just have difficulty bending my leg. I just think it’s worse going down, trying to with my leg.

Are you able to carry a laundry basket up a flight of stairs?

101–004: Um, a lot of times you’re carrying or pushing a cart or carrying a basket, and anytime I have to kind of, not just me, but I have to like push a cart or carry a basket, it just adds a little bit more, um, so it is just – I don’t want to say it is exceedingly difficult, but I definitely am more focused to make sure that I don’t shift my weight wrong or do something like that.

101–011: Carrying laundry up and, you know, carrying loads of laundry up and down the stairs that type of thing…. I definitely have issues, um, doing those types of things.

Are you able to stand for one hour?

101–001: My biggest issue is just standing still, you know, just putting all my weight…. It’s just – it happens all the time if I stand in one spot for more than like a couple minutes. I mean, probably within 30 s of standing – just standing, I start feeling like major discomfort.

101–005: I mean, I could stand for 30 min at a time, but it was not comfortable and I – it would, um, be painful and be a lot more swollen and full of fluid and all of that.

101–019: You know I can’t even stand for very long. When I go to church, I stand for a little bit and then I just have to sit down.

Does your health now limit you in bending, kneeling, or stooping?

101–010: If I drop something on the floor I will try to find a way to pick it up with my toes. You know, bending at the hips instead of the knee because if I—if I bend with the knee that hurts a lot.

101–017: So I don’t have a lot or range of motion on my knee, so I can’t bend down on my knees or get on my knees and, you know, kneel down or anything like that. I’m not able to do that. I can’t put any pressure on my knees and bending it, you know, the range of motion on my knee is not very good at all.

101–018: I would never think of bending to the floor using my hips so I think of bending to the floor as squatting down, bending my knees to the floor and that is extremely painful or probably the most painful.

Are you able to exercise for an hour?

101–001: I had to stop, um, running. I had to put it up as much as I could when I wasn’t working. So basically like as soon as I got home from work, I’d just sit on the couch and have it elevated, so I couldn’t do much. Definitely limited my activity.

101–010: I used to work out on my light elliptical machine and, uh, exercise bikes and stuff. I can’t do that anymore just because—well for the exercise bike that much movement makes the knee hurt.

101–011: I mean, I can’t run, I can’t, do any, you know, high impact kind of activities. I have a hard time even bicycling because of the range of motion, so, but I can ride a bike if I’m really careful, then I can ride. Um, but yeah, it affects my things I can do every single day.