Table 4.

Illustrative quotations of patient perspectives on symptom prioritization reasoning

Reason and Quotationsa
Frequency
 “Because it’s something that happens on a regular basis.” (Carrboro participant)
 “My doctor asked me all the time, when is it the time when you feel more light-headed than others? I don’t know, because it just comes. I can leave the room and all of a sudden feel light-headed. I get home, feel fine, and feel bad at the Kidney Center. It comes and goes. Like, you don’t throw up every day, but you do throw up. Just like I don’t feel light-headed every day, but it does come, you know what I’m saying? So like these symptoms come and they go.” (Seattle participant)
Duration
 “[Symptoms last] until you come back to dialysis.” (Carrboro participant)
 “Like I said, it varies, but it could last a couple of hours, or it can last the whole day, I have noticed. But that for me, it depends on how much they take off and how my run goes that day.” (Tucson participant)
Unpredictability
 “I come to find I don’t make plans, because I don’t know how I’m gonna feel.” (participant in Seattle)
 “I can’t keep plans with my mom, I can’t keep plans with nobody … That is true, I don’t want to be around anybody; I don’t want to be out.” (Tucson participant)
Social effect
 “Isolation, I was always a very social person. And because of the weakness and all of the physical symptoms, I can’t get out, you know. And then I had to retire, so I am home. And I have very little contact with the outside world and so it is—it is depressing, that’s where my depression comes from.” (Tucson participant)
 “I don’t want to do anything. I don’t want to eat. I don’t want to sleep. Just leave me alone.” (Carrboro participant)
Financial effect
 “Were these symptoms not issues, I’d have an opportunity to make money to take care of myself.” (Seattle participant)
 “I would go back to work. First thing I would do, back to school and work.” (Tucson participant)
  • a Quotations are from focus group participants.