Table 4.

Patient-reported descriptions of pain (ages 12–17 years)

Descriptions of pain	Patient quotes
Mild pain experience Pain level 0–2	“Yes, um, when I have a little pain (2) it just feels like … I probably … I will get hot sometimes or … and my heart starts beating fast like if I was playing football or basketball, I’ll start to get hot or … and my heart will start beating fast.” [age 12] “Well, um, when you have a little pain [2], it’s little. Just like it’s … it’s little. Um, you can still function. You can still talk. You can still do things. You know, you know it’s there but it’s not affecting you, you know, physically. It’s not affecting you mentally. You’re still able to function. Um, so that’s the way I … I think a little pain, you know, you’re … you know it’s there. It’s hurting a little bit but you’re still able to go on with your life and still do what you like to do.” [age 15] “[2 feels like] for instance like on a regular school day, maybe I’ll experience pain and fatigue, um, pain about twice a day and it’s not that bad.” [age 17]
Moderate pain experience Pain level 4–6	“[Regarding prior experience with pain at 4] Um, it hurted a lot but it didn’t hurt as much as like his face [10] … Well, it hurted sometimes, and then sometimes it won’t, and then it will come back again, and I’ll feel better. Then it will hurt and then I’ll just feel better.” [age 12] “When it’s above a five, to me, it makes a lot of things go down for you. Like when I’m in school and I have pain and it’s above a five then it becomes hard for me to function and hard for me to pay attention in class because it’s just … constant and … it’s pretty often. When I have pain, I have to go home.” [age 15] “Mmm, I’d say a six is like you can … well, at least for me, I can still bear it but it’s … it’s like you don’t really want to … you don’t have that much drive to do as much as you usually would because, you know, the pain is kind of dragging you down a little bit at that point.” [age 17]
Severe pain experience Pain level 8–10	“[Severe pain] will hurt a lot.” [age 12] “[Worst pain possible means] Like if it’s a ten, it’s … it can’t go any higher than a ten. It’s just you can’t take it anymore. It’s very painful. It’s excruciating and it’s … it’s, you know, it’s nothing else that you can do about it. It’s just the worst pain like you can’t do anything about it.” [age 15] “And about 20 min later, it went from a four to a ten. And both of my legs were hurting and my back and I couldn’t walk. I was screaming and hollering. I thought I needed an ambulance. It just increased like it can just go up like instantly.” [age 15] “[Regarding prior experience with pain at 10] Well, to me, once it gets higher than a five and it keeps escalating, m … medicine doesn’t really help me. I have to go to the emergency room. Now when I get to the emergency room, yes, medicine helps. But it’s fluids and morphine and things like that. It’s more medicine, you know, it’s more powerful medicines or stronger medicines that help the pain go down but even sometimes when you get the medicine, it doesn’t really cut the pain.” [age 15] “[Worst pain possible means] It’s constant and it’s at a ten. Like pretty much the whole day and over several days.” [age 17] “[Regarding experience with pain at 10] I guess I’m kind of used to it like I usually go to the hospital about once a year so that’s that … um, I guess you could say once a year kind of pain. You … when you have to go to the hospital and get pain medicine so definitely not a happy or fun time at all.” [age 17]