Table 4.

Sample Quotes from Adolescents About ADPKD Symptoms and Impacts

Symptom or Impact	Examples of Participants' Comments
Hypertension	“Like if like you stand up you get like really dizzy and see a bunch of different colors for a couple of seconds.” “If I don’t take my pills I will get really light-headed easily and then so like when I go to [amusement park] or something like that I can’t ride too many of the rides because I get really light-headed just going up and down.”
Pain characteristics	“Gnawing pain in the head and back.” “At the end of peeing my kidneys hurts a little bit.” “It stings when I pee.” “One or both sides as well, at the back.” “Pinprick sensation in the kidneys.”
Pain intensity	“They [kidneys] hurt so bad I could not get out of bed.” “I can’t stand straight anymore; my lower back hurts a lot.” “This pain is dull. It makes me feel numb when it is very strong, pulsating in intensity.” “It’s really sharp and like literally it feels like I’m being stabbed ….”
Pain attribution and duration	“When I am in a bad position for a long time.” “It can last from hours to minutes. Sometimes it’s like a contraction thing, like 5 minutes really, really sharp, and then I get a 10-minute break where it’s just dull and then it’s on and off like that.” “I’ve had cyst ruptures that literally keep me down for 20 minutes and then I’m fine.”
Pain impact on daily activities	“I can’t practice sports; I am not allowed at all, if I do my knees hurt a lot, I can’t feel my legs, and I start to tremble. I get chills and so on, and that’s that, and my kidneys hurt.” “No, I can do everything. It’s simply there. I think I’ve gotten used to it. It may put me in a bad mood.” “When the pain is bad I lay in bed and I don’t feel like doing anything.”
Pain frequency	“Maybe once in 5 months.” “Once a week more or less.” “A throbbing pain all the time.” “Bad pain happens at longer intervals.”
Fullness	“There is something that … is blocking after 2 bites.”
Urinary urgency and frequency	“All of the sudden I just have to go.” “This is sudden, that’s every day.” “I go to the bathroom and maybe 10 or 15 minutes later I have to go again.”
General impact on daily activities	“If I go by what physicians say I wouldn’t be allowed to do anything. I do sometime. I also need to have fun.”
Impact on sports or physical activity	“I need to use my body sparingly. For example, I try to avoid running, because I am afraid it will affect my health.”
Impacts on school	“It takes a lot out on a kid and like, I don’t know basic because none of the teachers wanted to teach me after I got back… And it has a really big effect on children because their learning is really affected by it and that’s probably my biggest concern.” “When I’ve had like a bladder infection, I need to go to the toilet and therefore I’m missing out …”
Dietary impacts	“A key thing is food restriction, and I also drink a lot of water.” “I have to watch my salt intake. I have to avoid chips, those things that are really salty.” “… all my friends are eating chips and popcorn and I’m just like eating an apple.”
Impacts on social activities	“I have to stop and think, I cannot do this right now because of this or because I have this condition.” “… I was not able to go on the rides because of my back …
Emotional impacts	“It either freaks me out if I keep thinking about it every day …” “You can’t really talk about it with anybody.” “When we talk about it I usually feel sad.” “When I first learned about it, I was pretty angry.”
Impact on life plans	“I want to have children, and pregnancy can be a problem and I know it’s a hereditary disease, so I will have to think about my children, whether I want to take the risk.” “Knowing that my kids may have the predisposition to some disease makes me sad.” “I will probably not consider having kids. I may adopt kids because I am afraid of passing it onto my children.”