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Table 2 Example quotes illustrating patient understanding of DED-Q modules/items

From: Development and content validity assessment of the Dry Eye Disease Questionnaire in patients with dry eye disease, meibomian gland dysfunction, and Sjögren’s syndrome dry eye disease

Module/item

Example quotes illustrating patient understanding (the patient ID code contains information about the patient including their: sex (male [M]/female [F]), age (in years), primary ocular condition (DED/MGD/SS-DED), condition severity (mild [MILD]/moderate [MOD]/severe [SEV]), round of interviews they were interviewed in (Round 1 [R1]/Round 2 [R2]), and the order they were interviewed)

Eye dryness severity module

“…To rate how bad my—the dryness of my eye is at this moment.” (F42-DED-MOD-R1-15)

Eye dryness frequency module

“It’s kind of in the middle and for the last 24 h I feel like, um, maybe approximately 50% of the time my eyes felt dry and I, you know, went to use my drops because of it.” (F35-MGD-MOD-R2-47)

Dry eye disease severity module

“I'm thinking about, uh, itchy, watery eyes, redness, swelling, um, blurry vision. So, um, I would say right now I'm probably about a four.” (M69-SSDED-SEV-R1-07)

Dry eye disease frequency module

“…Um, I think yesterday was a good day. So, uh, I think some of the time… Yesterday, uh, I felt a bit—like a bit of, uh, the grit feeling, but I put eye drops on.” (M27-DED-MOD-R2-42)

Symptom module

 Eye dryness

“Very dry, um, not enough lubrication, you know, not enough, um, yeah, they're not lubricated, so they're very dry, and, um, they cause, they cause blurriness.” (F42-MGD-MOD-R1-21)

 Eye pain

“I'd say within the last day it's probably—the, the worst of it has been a, has been a six where it's actual pain in my eyeball.” (F60-SSDED-SEV-R2-35)

 Eye irritation

“Um, eye irritation, it would be—past 24 h, it would be, uh, I'd probably say a six.” (F69-DED-SEV-R1-10)

 Burning sensation

“Um, you just feel your eyes are hot. I mean I hardly ever feel burning of the eyes, but I know when people say my eyes are burning, they feel hot, itchy, maybe red.” (F69-MGD-SEV-R1-11)

 Eye tiredness

“And the past 24 h, I would say, um, a seven…It’s just, uh, basically having like heavy eyes.” (M40-SSDED-MOD-R2-43)

 Something in the eye

“…that answer is 0, and actually I have not had—I have had a feeling of like there was something in my eye but that could have been six months ago.” (F71-DED-MOD-R2-38)

 Eye itching

“And I would give that a three within the 24 h. And like I said, at certain times my eye will itch, and I will find myself just rubbing, rubbing, rubbing.” (F59-MGD-MILD-R1-28)

 Eye grittiness

“I would say two…because when I feel like there's something in my eye, it feels gritty.” (F71-SSDED-MOD-R1-26)

 Mucus in or around the eye

“Well, I would say I do get that around—uh, I'd put a six, I guess. But, um, I do get that mostly in the mornings, so I put a six. It is the worst in the mornings in a 24-h period.” (F71-DED-SEV-R1-06)

 Eyes feeling scratched

“Eye feeling scratched. Yes. Because you actually feel like you've injured your eye. Um, in the last 24 h, I have not experienced that. I would give it a zero. I have not had that feeling.” (F39-MGD-MOD-R1-02)

 Eyelid redness

“No. Zero. I get no, no—from what I can see, I don’t get no, no redness on my eyelid.” (M48-SSDED-MILD-R2-50)

 Eyeball redness

“I'm going to give that a four… because yesterday they were red. They were slightly red. They looked a little irritated and tired.” (F57-DED-MOD-R2-60)

 Watery eyes

“So, this morning I would give that a three… Uh, I would describe a three as, um, my eye constantly filling up with water and I'm having to use a, a tissue to—excuse me, to use a tissue to wipe my eye or dab at my eye.” (F59-MGD-MILD-R1-28)

Blurred vision module

 Blurred vision severity

“…it's like things are out of focus and, um, it takes—it seems to take some time, five or ten minutes at least for things to come back into focus.” (M68-SSDED-MOD-R2-31)

 Blurred vision frequency

“Um, some of the time… Because it’s not constant, it’s just like in between like every couple of hours.” (F48-DED-SEV-R2-49)

Environmental triggers module

 Light sensitivity

“So, 24 h, so, um, I would give that a four because when I go out into the sunlight, my eyes really—they're really sensitive to where it watered up a lot.” (F59-MGD-MILD-R1-28)

 Wind sensitivity

“Just any little—you know, a certain breeze will come and hit me in the face, and I have trouble with it.” (F80-SSDED-SEV-R1-05)

Visual tasking module

 Read books

“Sometimes, some of the times… Especially when I read at night, um, my eyes are really, really tired because of the redness, the burning. Sometimes I, I do experience, um, problems reading books.” (F21-DED-MILD-R1-22)

 Read on screen

“I would say some of the time…that's a, a big thing for me 'cause I'm always on the screen. So, um, if I don’t change the brightness, I would definitely feel some irritation…The heaviness, um, I guess, you know, like slightly like the burning but the heaviness of your eyes, like the tired feeling of your eyes actually from staring at the screen so long.” (F43-MGD-MILD-R2-48)

 Watch TV

“Watch a program on TV. Uh, I can say just a little of the time. It really doesn’t bother me a lot. It's more—now I realize it's more the computer than the TV.” (F50-SSDED-MOD-R1-01)

 Household chores

“none of the time really… It don’t affect. So, it don’t affect me none of the time to do household chores or laundry or cleaning. No. It don't bother me.” (F69-DED-SEV-R1-10)

 Hobbies/sports/leisure activities

“Some of the time for this one…Uh, well, when I'm at the gym, you know, um, and I'm sweating and, um, I don't know, I get dry eyes. Um, when I'm doing puzzles, uh, same thing, you know, like I get the blurry vision, I have to step away for a bit and then come back to it.” (F42-MGD-MOD-R1-21)

 Watch events at distance

“Um, with this one, probably some of the time. And depending on the event, maybe a lot of the time…I would still of course like musical events, but the sporting events, it, uh—um, to me it's not worth watching a sporting event if my eyes are going to get tired.” (F36-SSDED-MOD-R2-32)

 Drive during day

“…A lot of the times because I'm looking at the car ahead of me and so I'm zeroing in on something ahead and it seems to be, uh, blurry sometimes… So that is a problem. And I put a lot of the time.” (F71-DED-SEV-R1-06)

 Drive at night

“So, in the past seven days, driving at night, I have driven at night and, uh, I don’t really feel any symptoms because there's no sunlight and I do have my windows up. So, I would say none of the time for that really, you know, when I'm driving.” (M20-MGD-MILD-R2-59)

HRQoL module

 Depression

“I was working on a job and I wasn’t able to complete it when I needed to and that, that—I felt depressed about that because it was an important one to me.” (F60-SSDED-SEV-R2-35)

 Anxiety

“…I would say, um, a little of the time” “There’s times when I’m anxious to kind of relieve the irritation so that I could continue with my day. So yeah, a little of the time.” (M29-DED-MOD-R2-46)

 Frustration

“Frustrated, some of the time…It makes you frustrated because sometimes, uh, nothing really helps. Nothing helps, um, you know, in an extreme manner. Sometimes it's just very frustrating just not knowing what to do.” (F39-MGD-MOD-R1-02)

 Worry

“I don’t like to, you know, try to see what's going to happen in the future, but I can't predict it, but, you know, it does make me feel like, you know, oh, well, you know, I feel a little bit worried.” (M48-SSDED-MILD-R2-50)

 Sleep

“Um, I'm going to say one to two because just waking up trying to stop them from feeling, um, irritated…” (F44-DED-SEV-R1-13)

  1. DED dry eye disease, DED-Q Dry Eye Disease Questionnaire, HRQoL health-related quality of life, MGD meibomian gland dysfunction, SS-DED Sjögren’s syndrome dry eye disease, TV television