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Table 2 Symptom concepts and supporting quotes

From: A qualitative study exploring the health-related quality of life and symptomatic experiences of adults and adolescents with ulcerative colitis

Concept included in revised conceptual model of UC % Example quote from adult participant % Example quote from adolescent participant
Abdominal/stomach pain 100% Yeah. Uh, m-most of my pain will be in the abdomen and the lower quadrant” CH-003-A-M 100% ... It’s kind of like a sharp, sharp pain. ..and just ... It’s pain … right here on my abdomen ... That area.” CH-012-a-M
Stomach cramping 81% “an extreme amount of abdominal cramping. I can’t lay on either one of my sides, the left or the right side.” BM-002-A-F 93% no one wants that cramp, tightening, balled up, like somebody’s stabbing you in your stomach feeling.” CH-002-a-F
Stomach bloating 86% Yeah, it tends to get harder and kind of swollen in that area [points to stomach]. Um, and if my flare continues it kinda turns into I’m just bloated all day long and it’s kind of uncomfortable to eat ‘cause the food doesn’t hurt me, but it just, I guess filling up my stomach on top of the bloatness is just uncomfortable.” NO-001-A-M 78% Uh, usually it’s like when you feel bloated, like you’ve just- … like ... Like when you’re, like, extremely full” CH-011-a-F
Frequent bowel movements 90% And I was going to the bathroom [for a bowel movement], like, every hour all day.” BM-001-A-F 93% in my physics class I used the bathroom [for a bowel movement] three times and my class was 45 min.” CH-010-a-F
Sudden need for bowel movement 90% That’s the urgency is because your muscles can’t hold tight enough to prevent the liquid [diarrhea] from coming out … I’ve got to go now because it’s just gonna come out.” SL-002-A-F 78% And then I just feel like, I don’t know, like I feel like I just get a 10 s timer and once I feel it I’m like I need to use the bathroom [for a bowel movement]” CH-015-a-F
Incomplete evacuation 38% “And then once it comes out [bowel movement], you’re like, “Okay, I think it’s done.” You’re like, “Nope. Not done. I’m going to sit here for another 10, 15 min.” SL-002-A-F 43% it feels like you need to stay on there but you really don’t need to..” CH-009-a-M
Bowel movement tenesmus 38% I’ll have to feel like I have to go [for a bowel movement], go to the bathroom but nothing.” SL-005-A-M 64% Sometimes I’ll go to the toilet and it doesn’t come out.” CH-010-a-F
Incontinence/leaking 19% After having the [bowel movement] accident on myself and was just humiliated” BM-002-A-F 78% “I was in the middle of the day at school. I had stained my pants really bad.” CH-010-a-F
Diarrhea 86% It’s like pure ... like just fluid water [during a flare]” SL-002-A-F 100% Uh, I want to say like- like diarrhea, but like I don’t really know how to explain it” CH-016-a-M
Constipation 71% So, I just kind of be clenching for it all day, just waiting to see, am I going to be constipated, am I going to have diarrhea?” BM-001 78% It kinda gets me constipated sometimes.” CH-001-a-M
Feeling gassy/passing gas 86% ... sometimes I would lay on my side then to try and pass some of the gas … gassy and feeling all hurt all over my sides ‘cause it’s just too much air inside of my body ...” BM-002-A-F 78% Gas, yeah. I get gassy sometimes.” CH-004-a-M
Mucus in stools 67% “Sometimes it was just, like, the blood and the mucus that was just coming out.” NO-006-A-F 21% Um, like mucus, blood sometimes ...” CH-006-a-F
Blood in stools 90% Yeah, typically the biggest symptom is blood in my stool.” SL-005-A-M 78% … when it’s like semi-solid … usually there’s blood.” CH-004-a-M
Nausea 33% I’ll actually start to feel a little nauseated” NO-004-A-F 7% Participant: it’s really hard for me to eat [because of my UC]- Like- like I- I think I’ve tried it [food] before and like I think- I think I puked it up
Interviewer: Oh, okay. So it made you nauseous?
Participant: Huh? Yeah, it just like did not feel good [nauseous after eating foods].” CH-016-a-M
Vomiting 29% “The pain gets to the point where it’s so bad that it forces me to throw up.” NO-002-A-M 21% “Sometimes, on some cases, I, like, throw up.” CH-011-a-F
Sweating 19% I can like start sweating in the middle of the class in front of the kids.” NO-001-A-M 7% Uh, It kind of just feels like you’re sweating … really sweaty and stuff.” CH-011-a-F
  1. UC ulcerative colitis, a adolescent, A adult, F female, M Male