Table 3.
Illustrative quotations of patient perspectives on hemodialysis-related symptoms
| Symptom and Quotationsa |
|---|
| Top focus group–prioritized physical symptoms |
| Insomnia (22 of 32 participants; 67%) |
| “I may sleep for an hour, and then, when I am awake, I am awake. Like the night before last, I was up all night long. And then last night, I slept for about 2 h, and that was it, you know. And I don’t know if that is—because I didn’t do that before. So I don’t know if that is part of the dialysis or what it is, but it is there.” (Tucson participant) |
| Fatigue (20 of 32 participants; 63%) |
| “There’s days where I come in like two to three kilos heavier and sometimes where I go a little bit off track and come in like around four, four and a half … [Fatigue] is just like, imagine working 12 h and then having to go home and do all the house stuff.” (Tucson participant) |
| “I prefer to have showers more often than I do, but sometimes, I’m too fatigued to get up and go down there.” (Seattle participant) |
| Muscle cramping (18 of 32 participants; 56%) |
| “I used to get cramps, like what people call Charlie horses, every once in a blue moon. But like I said, on dialysis, I’m catching cramps where I never thought you could get cramps; in my eyelids and my throat. Say, in my ribs, right here. I can catch ’em anywhere and I never got ’em before, and I used to play sports.” (Seattle participant) |
| “Cramps, leg cramps. That is the most important to me, because I always cry when I get cramps.” (Tucson participant) |
| Nausea or vomiting (14 of 32 participants; 47%) |
| “I was walking to the buses, and I puked in the bushes. People think I’m a drunk.” (Seattle participant) |
| “The nausea thing for me; I have some stomach issues going on which kind of like, that is 24-7, but when I walk into those doors, the nausea kicks up. I think that has to do with my anxiety. So it’s like every run, I would say, so 4 d out of the week for me.” (Tucson participant) |
| Body aches (20 of 32 participants; 44%) |
| “[Body aches] hinder our day to day lifestyle, because we have to live with this pain or discomfort.” (Tucson participant) |
| “I have body aches … especially my arm.” (Tucson participant) |
| Vascular access–related discomfort (11 of 32 participants; 34%) |
| “Well, if you have steal syndrome, like sometimes, if I need to write and I got it, I can’t write. So that is how it affects my daily life.” (Tucson participant) |
| “Feel bad because of my fistula. After they poke you and then they say we got to move it again. Oh, shoot.” (Tucson participant) |
| “I have two fistulas in my hand, and certain movement that I do I feel like [a] cold shot through my arm. If I’m holding a bag or if I’m holding something, if I move my finger a certain way, I can dang near drop the bag if I don’t have this hand ready. And muscles, like the muscles in my arm, get sore after a while.” (Seattle participant) |
| Blurry vision (six of 32 participants; 19%) |
| “I know for me with the blurred vision, I go to a dark room … and just sit there, and I may sit there 2 h. And she comes in, and she’s like that’s depressing. No, it’s not. I’m trying to get my eyes focused, because when my eyes are blurry, I start to get headaches, and then, I just go down from there.” (Carrboro participant) |
| Top focus group–prioritized mood symptoms |
| Anxiety (16 of 32 participants; 50%) |
| “Anxiety—I am always anxious.” (Tucson participant) |
| “I have anxiety with the needle. I mean, I’m an 18-yr veteran, and every day is still a new day; it’s just like the first day with that needle. I can work all day long and not wear myself out, but I’ll wear myself out just when they put the needle … and it doesn’t even hurt. I mean, sometimes it does, but they numb it all up and stuff, but I still go through the changes as if I was going to get kicked upside the head.” (Seattle participant) |
| Depressed mood (14 of 32 participants; 44%) |
| “[Depression] happens all the time; I go home and start thinking about what I have to go through. You see the people [patients on dialysis] and then find out that they died, and it is just hard. It is depressing to be dependent on a machine and have to go through this over and over again. I move past it, but it happens all the time.” (Tucson participant) |
| “People get tired and worry; then they get depressed. They stop dialyzing and die. That needs to be looked at real hard.” (Seattle participant) |
| Frustration (nine of 32 participants; 28%) |
| “I mean the cramps, being tired, blurred vision—that happens because of the actual treatment. So that happens instantly. With me, it does. I mean the other stuff, like the frustration and what not, that comes after dialysis and having to deal with the technician. That’s something totally different.” (Carrboro participant) |
| Irritability (nine of 32 participants; 28%) |
| “Conversating [sic] with everybody, you really don’t want to. You don’t want to be around anybody. You just want to be by yourself.” (Carrboro participant) |
| “Sometimes you get in a bad mood—so you know—don’t talk to me.” (Tucson participant) |
| “Sometimes noise, loud noises is irritating. It irritates you real bad.” (Carrboro participant) |
| Worry (six of 32 participants; 19%) |
| “[Worry] all the time.” (Carrboro participant) |
| “Well, people get to worrying, and they get tired, and they get depressed, and then they quit dialyzing and die. I’ve seen a number of them do that. So that needs to be looked at real hard.” (Seattle participant) |
a
Quotations are from focus group participants.