Table 3 Patient quotes representing salient concepts identified during concept elicitation

Signs/symptoms

Fatigue/tiredness/lack of energy

“Even now, as soon as I wake up like extreme fatigue like I just am so tired, and like I said, I mean, I just have never felt like this before.”

“Getting to sleep, waking up. Kind of a whole mixture of problems of not feeling well rested and feeling tired and dragging and not having enough energy to kind of falling asleep in the afternoon because my body's so tired and rested.”

Swelling in legs/ankles/feet

“I will tend to get oedema or swelling in my legs, primarily in my left leg, not my right leg.”

“I was experiencing a lot of foot pain, and that was based on swelling of the ankles.”

Increased urination (including nocturia)

“I saw times where it's gotten worse. It even got to the point I would wear a pad in my underwear and be scared to go out. I would be scared to go out.”

“Because sometimes I will get up in the middle of the night. And that would make me go to the bathroom. I'm only 48. I feel old when I have to do that.”

“I can’t sleep through the night. Getting up to use the bathroom is about four times a night.”

Sleep problems

“I feel like I haven’t had a good night’s sleep in over two years. I’ve never slept more than two or three hours at a time.”

“Some nights I wouldn't sleep correctly, and sleep issues and problems are a big part of kidney disease.”

“I will have really bad insomnia. It’s hard to fall asleep. Or I’ll be asleep, and I’ll just wake up at 2:00 in the morning, ready to go, so it’s very bizarre sleep patterns.”

Impact

General negative emotional/mental impacts

“It’s more emotionally affects me, I think, than physically because I can’t feel that I have CKD.”

“For me, CKD is more mental and emotional than physical, primarily because, from what I’m dealing with, there’s really not a lot of hope as far as medications go to improve or maintain the kidney function.”

Anxiety/worry

“There was certainly some anxiety. I still have a son I need to raise. Am I going to be able to take care of him? What’s going to happen to him if I’m not here?”

“I'm very worried about the numbers going into a stage 3 because my understanding is once you start to decline with the stages, it kind of happens quickly and can be a really fast downward slide.”