Table 3.
Impact concepts and supporting quotes
| 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 |
ADLs activities of daily living, N/A not applicable, UC ulcerative colitis a adolescent, A adult, M Male, F Female