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Table 3 Concept elicitation interviews: overview of key impacts reported by women with endometriosis (n = 45)

From: Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

ConceptSub-conceptExample Quote (Patient ID#)
Physical activities (n = 44)aLie down (n = 42)“It was intense pain in … at times I really felt too much pain in my abdomen, and I felt that the only way … for it to go was to lie down … and I had to lie down.” (503)
Walking (n = 22)“I can hardly walk, and as I said, without pain is out of - pain killers - is out of question.” (406)
Standing (n = 25)“And some days I was like I can’t even stand up because I’m in pain.” (305)
Sitting (n = 14)“I can’t drive for long periods of time. I can’t sit up straight for long periods of time.” (306)
Lifting (n = 16)“Yeah, that when I get the pain, I’m like I can’t pick kids up. It hurts. My stomach hurts.” (301)
Carrying (n = 16)“There are heavy things, let’s say, when my abdomen hurts too much, anything heavy I don’t carry it.” (505)
Exercise (n = 28)Running, jogging, that’s absolutely out of the question. I used to run two miles a day, and weight train for an hour a day, and I can’t do that anymore” (306)
Emotional state (n = 45)Sad (n = 21)“Yes, the sadness because my kids want to do things, and we don’t go out and stuff sometimes.” (207)
Depressed (n = 22)“Because it makes you depressed, because you are in bed.” (204)
Irritable (n = 13)“Like it [the pain] just makes me irritable, like I said.” (207)
Bad mood (n = 23)“When I am in pain, I have mood swings and I know the pain causes them.” (513)
Angry (n = 15)“I just get - when the pain comes on I get angry (305)
Annoyed (n = 19)“it was frustrating and annoying, because I had to leave work constantly to go to doctor appointments all the time” (301)
Anxious (n = 23)“Just depression and anxiety because of pain.” (305)
Stressed (n = 10)I feel stressed, just waiting at some point of the day to be ambushed by an excessive amount of pain” (306)
Sexual activities (n = 30)bAvoidance (n = 23)“I final stopped (having sex) altogether - because it was just no longer tolerable.” (410)
Limited enjoyment (n = 12)“At each penetration… when it’s painful. So, it’s quite unpleasant, it’s unpleasant for me” (509)
Work and study (n = 39)“Because when - I couldn’t even go to work if I’m having severe pain, so I’d have to call in sick.” (206)
“At work or after, I used to be able to do more with my time but now it feels like I’m slowing down (201)
Social and leisure activities (n = 36)“Well, when the pain was very severe I would have liked to curl up like a hedgehog somehow, that one - that I be left alone - I do not want to have to deal with anyone (403)
“…my partner and a bunch of friends were having a big potluck dinner at their house. And they live across town, and it would have been a bike ride and I wasn’t feeling well, so I didn’t go.” (101)
Household activities (n = 27)“…when I’m not feeling good, then it just kind of sits there and then when I feel better, I go in and do it.” (106)
“It slows me down like with all the usual things I have to do at home.” (302)
Impaired sleep (n = 36)“A lot of times I’ll wake up in pain. If I’ve slept through my next opportunity to take another dose of pain medication, then the pain will wake me up and I’m just sort of awake after that.” (101)
Impaired concentration (28/45)“I mean, trying to drive a car and you’re in pain. Well, that’s taking your - you’re distracted. You’re thinking about that, not what you should be. You’re not thinking about your job or everyday life activities.” (301)
Eat less (8/45)“Because the pain’s so bad I feel sick to my stomach. I feel like I can’t eat.” (301)
  1. a Number of participants reporting impact during CE interview
  2. bNote that four study participants commented that they were not sexually active at the time of the study
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