Table 4.
Concept elicitation results: example patient quotes on concepts in the preliminary 19-item P-SIM
| Item | Example quotes |
|---|---|
| 1. Skin itching | [01–04]: …like you’ve been, you know, rolling around in the grass, and you got a million little grass cuts and you’re all itchy. It’s like that…In fact you feel itchy over your entire body even where there’s not psoriasis for some reason. …it’s gotta be part of the psoriasis you know |
| 2. Skin redness | [01–02]: …it’s kind of like poison ivy, sort of, because um, the area that’s already like slightly pink will get more red and then you just got, you just want to scratch it. …pink when it’s sometimes controlled. Red when it, it’s like really irritating |
| 3. Skin pain | [01–04]: I mean, well I mean it can feel pain like a real a soreness or something. You can feel the, the scales like pushing together or something like that, you know |
| 4. Skin burning | [01–05]: At its absolute worst as far as feeling goes, it gets to the point where it feels hot or itchy and I have a nature of, even if I know I’m not supposed to scratch it really bad…And then it, it gets painful, um, and not always, but most of the time gets painful and like um, almost like a heat pain…The heat pain for me is basically that it, it’s, I feel pain but I also feel hot in the area… |
| 5. Skin scaling | [01–15]: Scales are messy. They show up everywhere. You can just be walking and you know, you just scratch it like a little bit and then, you know, and it falls out…my legs have always been the worst, so it just does doesn’t go away so it’s always scaling |
| 6. Skin stinginga | [01–02]: It will sting at first but then you’ll see the red. It will bleed a tiny bit and then you have to, the um, white coating from the body coming out to try to heal the wound, which is still the actual psoriasis itself also works out that way because it pushes double the amount…It stings once it hits the air the first time, like a regular wound |
| 7. Skin cracking | [01–09]: I feel like it looks like cracked um, I don’t know if scaly is the right word. It’s more like, like, it’s almost like cracked skin like if, if, if you ever had your knuckles get really really dried out in the winter so bad. Or from like washing a lot of dishes, I can only compare it to that where you get like these little cracks that sort of go through all that and it’s like into the red part. More like a cracking. Thin, thin small cracks |
| 8. Skin flakinga | [01–04]: …I’ll sweep the floor in my room and there’ll be a big pile of skin flakes…Um, like I say, when I, when it’s really bad, it’s you know you’ll get like the, the plates, can be like two inches in diameter, something like that and, and thick. I mean like cause there’s so many layers of skin there, it’s kinda of all dried and hardened |
| 9. Skin dryness | [01–02]: When you get out it’s hardening it back up but then on the slight corners it will raise up a tiny bit because of the it’s drying back up so like a curling thing. When it gets fully dried up then that’s when you start you start feeling the sensation of it drying up. …That’s when you’re putting on your clothes or when you just move around a certain area. It ends up um, peeling off, flaking off, and something like that when it dries up fully |
| 10. Skin irritation | [01–15]: It’s, it, it’s itchy and it’s irritating…it just keeps, you just keep itching, just keep scratching or you keep wanting to just pull the, pull the scales off and constantly keep pulling the scales off, just to like, after you pull the scales off put lotion and just try to get that rough part away, the roughness away…do I get the irritating without the itchiness? No, those come hand in hand |
| 11. Skin sensitivity | [01–01]: …when you have the pain it’s very sensitive. Even if somebody touches you, even if you get touched by the clothes, it’s very sensitive in that area…I think I become sensitive, very sensitive is when, sometimes I say to my wife, to put the cream on my back, which on my back I could feel my back in pain right away, because the skin is so sensitive |
| 12. Skin lesions | [01–14]: Um, what happened is, it starts with a small lesion, you know, like a rough scratch on your skin and it kind of becomes bigger. Again, there’s no open wound whatsoever, it just starts from a small dark spot and then if you don’t treat it well it becomes a bigger dark spot, you know, the skin |
| 13. Skin thickening | [01–04]: Yeah, I mean the scales can be like giant thick pieces of skin. You know like um, like fish scales…thick because the skin is growing so fast I guess, that the fuses the skin, are you know, no kidding like two or three millimeters thick, see |
| 14. Sleep lossa | [01–07]: …your feet are really rough or something like that and they’re like pulling on the sheets. (laughing) That ends up happening. And um, the um, you know I’ll get up in the middle of the night. I might have to moisturize it, it, it might be too dry. So you know, it does wake you up when it starts to bother you |
| 15. Fatigue | [01–15]: It drains you…you don’t want to do nothing all day. If somebody asks you to do something, I don’t feel like going out…I’m not as active, because with the medications and everything, it’s just, it feels like it’s draining |
| 16. Feelings of embarrassment | [01–08]: …if that starts to flare up, that’s embarrassing because I have these big rosy patches, I haven’t let them get to the point of flaking but they’re big red rosy patches on each side of my nose |
| 17. Avoid doing usual activitiesa | [01–11]: Do I, do I have to go out because I don’t really feel like going out because like that, you’re having a little bit of bad mental day, just want to sit inside for a little longer away from all that stuff |
| 18. Personal relationshipsa | [01–01]: On the worst, worst day is when my wife, when she asks me a question and I don’t want to answer it, I don’t feel like answering it, or my son…Q: You don’t feel like answering their questions? A: No…Because I’m in pain, upset |
| 19. Choice of clothing | [01–08]: You don’t want to, you don’t, you try to cover up the spots as much that are on your body. And being that it’s covering the majority of every spot of my body there is really nothing that I even want to show…It is on my hands, but like I said, I try to control that the most since, I work and type and everything in front of customers, with my job. Um, I can’t wear shorts or a skirt if I wanted to, um, at this point I can’t even wear, um, sandals…Because the spots are on my feet |
A answer, P-SIM psoriasis symptoms and impacts measure, Q question
aThis item was ultimately removed from the final 14-item P-SIM