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Table 3 Impact 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
Emotional/Psychological Impact
 Low mood and depression 76% I’m so drained, I’m so down, I’m so dealing with this thing, it’s so all-consuming, you know” NO-005-A-F 78% … like I feel sad sometimes about having a condition” CH-002-a-F
 Worry, anxiety, fear 81% But yeah, I worry all the time.” BM-005-A-M
“And the reason I feel scared is because I never know if I’m going to have to get up in the middle of something and-it’s.. Just living with complete uncertainty” CH-008-A-M
86% is a, [picture of] a girl that looks like really scared, or like worried about th- something. And so I picked that, because like I honestly never know when it [UC attack] could happen, so it’s like, kinda like worries me” CH-008-a-F
 Embarrassment 90% “Embarrassment sometimes because you don’t really know, you know, how to describe it to people” SL-003-A-F 86% “It just makes me embarrassed.” CH-009-a-M
 Low self-esteem 24% I just feel, like, gross, kinda (laughs). Like my, just, my stomach doesn’t feel good, and, and, like, I don’t feel sexy or (laughs) anything like that.” NO-006-A-F 36% Just like kinda like, always like worrying about like, what people think, and like it’s kinda like embarrassing, so like I kinda wanna like keep it inside.” CH-006-a-F
 Anger 52% But I was angry in the beginning. I would say why me?” CH-008-A-M 57% Makes me angry that I have to miss out on so much learning I could be using” CH-001-a-M
 Frustration 52% “Because you can’t leave your house, or you can’t go out, and that’s extremely frustrating.” NO-002-A-M 43% it is kind of frustrating … ..Like that I can’t really do … there’s really no like real treatment.” CH-004a-M
 Irritability 43% Because it made me very anxious and irritated” BM-002-A-F 24% I just be like, “Really?” Like, like I be crying sometimes, because I just be like, “Oh, my God. This is so irritating.” Like, I don’t want to go through but I have to.” CH-002-a-F
Social Impacts
 Social life 38% For me, it, it uh, it’s really difficult to, to have to cancel plans and, and not go out to things, and not see the friends that I want to see. Um, because of a, a flare up.” SL-005-A-M 78% Um, maybe when my friends want to go out and I’m just ... I just say it like I don’t feel well because otherwise if I do go out and I have those pains I would kind of be embarrassed” CH-012-a-M
 Relationships with others 71% Now, with my family, they, th-they, they’ve been through this for a while so they kind of understand that there’s ... there’s that unpredictable, unpredictability that can happen. But uh, basically if it [UC] happens I’m going to stay home. I’m going to end any event ... any things that I was going out to a dinner, to a movie or show ... No. You can’t do that” CH-003-A-M 93% I don’t really try going out and doing anything like my family wants to go out to dinner like I’ll kind of just stay home.” CH-014-a-M
 Having to plan around UC 85% I’m afraid if I go anywhere is that I’ll have to find a bathroom … I don’t like to go to anyone’s house because I’m so embarrassed to go to anyone’s bathroom.” SL-003-A-F 78% I mean, my parent’s probably try to like plan around it, but ... there’s not much you can do.” CH-006-a-F
Physical impacts
 Limitations on eating/drinking 90% Like sometimes you can have pain, like I can have some pain here. But if you add alcohol to that pain, then it intensifies the pain” BM-003-A-F 71% So like by controlling what I eat like a lot of stuff is like it makes a lot easier to deal with.” CH-004-a-M
 Impact on work 85% One time I was at work and all of the sudden it came on me just real fast and I got it all over the walls, all over” NO-003-A-F 28% it was hard at first and they’re like, really? Are you going to keep calling in? How often are you going to call in? I get really stressed, I’m like, I don’t want to call in to work right now...” CH-018-a-F
 Limitations on ADLs 24% It will impact my daily routine if I want to go out and do recreational activities, it will impact that” CH-008-A-M 57% I feel my stomach hurts, I can’t do anything” CH-017-a-F
 Tiredness 43% Um, and the tiredness, it just wipes you out. I can honestly say, I can remember early in the beginning of it all, I didn’t know where the tiredness came from, you know” BM-002-A-F 24% Um, it [UC] gets me pretty- pretty exhausted, um, and I’m like tired..” CH-016-a-F
 Weight loss 19% “I mean, with losing the weight, I get” SL-005-A-M 43% Over the course of like me having this disease, I’ve lost a lot of weight.” CH-016-a-M
 Feeling dehydrated 19% “I feel usually dehydrated [just before a UC flair] so I can tell something’s up.” CH-007-A-M N/A N/A
Other Impacts
 Impact on school N/A N/A 86% That day was really bad. I ended up leaving school early. I was in the middle of the day at school. I had stained my pants really bad.” CH-010-a-F
 Impact on sleep 62% Yeah, tough to fall asleep, and then, like, if I move and I wake up, like, last night I woke up to go to the bathroom, and then I just ... I couldn’t fall back asleep” NO-006-A-F 93% Yeah. It wakes me up in the middle of the night and I’m like, no. Now I can’t sleep.” CH-018-a-F
  1. ADLs activities of daily living, N/A not applicable, UC ulcerative colitis a adolescent, A adult, M Male, F Female