Table 4 Nuanced factors that impact health related quality of life across modality type: Exemplar quotes

Physical health and well-being

“When I’m on hemodialysis, I’m always tired. If I wasn’t on dialysis, I wouldn’t be tired…I just don’t have the energy anymore.”

“Before I started hemo, I couldn’t get out of a wheelchair, I couldn’t get out of a chair. Somebody had to help me into bed and out of bed and get my clothes on and have a shower….but I’m getting stronger.”

“I have a lot more energy and I am a lot less tired. I generally just don’t have the kind of fatigue that I would get after an in-centre dialysis treatment, and I don’t feel as fatigued on the few days that I do take off.”

“They were able to take me off pretty much all of my blood pressure medications. So I’m only on one pill now, and it’s a lower dose than what I was originally on.”

“I find myself more sluggish with all the fluid in with the PD. I’m back to work now and I just feel sluggish.”

“I can do many things that I could not do before….I used to not be able to go up the stairs without shortness of breath….now I walk to [the grocery store]. It is about 3 kilometres from my house. We walk there now.”

Mental health, well-being, and self-perception

“I know that there is a part of me that is never going to get better….I pretty much accept things as they are. It’s life.”

“Lower energy. Getting depressed. You just don’t even know what you can do. I was hoping I would go from hemo to PD to transplant. But now that PD has failed, I feel like I’m starting all over again”.

“I think overall I am just more independent, more in-tune to how I am feeling. I am more aware of my health, and I am just better educated about dialysis and how it is helping me.”

“I feel like I have a lot more hope. I feel hopeful that I can have some sort of quality of life.”

“I used to worry about the future and what would happen to me. I thought I should go back to the Philippines because I did not have much life left. But since dialysis, I feel better.”

“Sometimes I get irritated by things. It’s a big change in lifestyle and I guess that’s what’s getting me down more than anything else. But it’s getting better. The PD is helping.”

Interactions with/impact on family and friends

“As far as support, everyone has just been great. You know, my daughter goes to work a half hour early in the morning and stays a half hour later at night so that she can take an hour at lunch to take me to dialysis. She’s just been such a huge help.”

“They’re afraid to let me do anything. I have to tell them, ‘You know, I can do some things. I need to do something’….nobody has asked the doctor if I should just sit on my chair all the time.”

“I’m spending more time with them [family]. And…I think they’re more in-tune with what I am doing as well, because it’s more front and centre and visible to them.”

“There is some impact on my wife. She feels she has to be here in the house all the time in case something goes wrong…I’m trying to reassure her that she can [leave the house] and she doesn’t have to worry about me, because I’ll be fine.”

“I don’t visit with friends as much because I go to bed earlier.”

“My wife, and sometimes even my children, they don’t want me to participate in things that they think are not proper for me…for example, sometimes washing dishes, my wife tells me that if I get myself wet, especially where the tube is coming out of my belly…it might start an infection and I might get in trouble. Therefore she tells me not to touch anything.”

Symptoms of kidney disease/dialysis

“I find that most days after dialysis, I have a lot of soreness in my legs….they call it restless legs, but mine are sore. It’s not that they have to move. It’s that they ache.”

“My legs get achey after dialysis, usually from my knees down…it’s not cramps. It’s different from cramping. It’s aches.”

“I don’t get the cramps. I don’t get the itchiness. All of the nausea and throwing up and all of that stuff is gone.”

“I do feel much better now, on home hemo, even though I have headaches that last for 5 to 6 hours after I have finished dialysis. I would choose that over the total sleeplessness, and the drain pain, and the brain fog that I had on peritoneal dialysis.”

“The itchy skin is gone….it was driving me crazy [before PD].”

“I get heartburn like you wouldn’t believe, with all the fluid in there….I’ll have chewed up half a dozen Tums just to get to the end of the day. Twenty-four hours a day I got heartburn. Nighttime is usually the worst.”

Quality of sleep

“I was getting up a lot in the middle of the night to go to the bathroom before dialysis….not so much after I started. I was peeing less.”

“On PD, I hooked up and went to bed, and then I got up in the morning. Very seldom was I awake all night. But with this [IHD], I can be awake a lot.”

“Some nights, for whatever reason, my machine alarms a couple of times, so obviously those nights I get a little less sleep. But that’s not really that often, and overall my sleeps haven’t been impacted at night.”

“I would say that in his [husband] sleep quality, it has impacted us negatively. But in terms of my quality of sleep, I do sleep better on home hemo that I did on peritoneal because I don’t have the pain during the night.”

“At the beginning…I turned and tossed in the bed, and the tube would get twisted and cut off the flow and then the machine would start making all kinds of noises, so that was a bit of a challenge. But slowly I’m getting used to it.”

“I still haven’t adjusted to the night, because when the cycler changes and starts to drain like a vacuum, I just sort of wake up…but I am adjusting and it’s getting a little better over time.”

Ability to maintain employment

“I had more energy at work [when on IHD] because I was sleeping better.”

“Because I just feel better at work, I think that my productivity while at work has improved.”

“I wasn’t working while I was on PD. I just went back to work after the home hemo started…For the most part, I work half days.”

“As far as working goes, with my specific job, I don’t have a problem with it….I can go to work and I can provide for my family. I can do that….if I had to do hemo well…I couldn’t do what I do for a living.”

“I was a farmer, so I’m quite physical, but I can’t really do that kind of work anymore like I used to. If I had had a difference source of employment, I probably could have been just fine.

Participation in hobbies, activities, and travel

“Now when you want to do something, you have to say ‘Well, let’s wait and see where I am in the morning’. Whereas with the peritoneal dialysis, I could just do. Sometimes I’d be tired, but I’d be able to do it.”

“And being trapped in Calgary. Because I can’t go anywhere. Well I can, for maybe two days, but I have to be back right away. And I have to go somewhere where there’s a machine”.

“Say if we wanted to go somewhere and stay somewhere else overnight, we have that possibility now.”

“I mean, basically these machines place you on house arrest. I can go away for a couple of days, but I have to make sure I get back in time to get onto the machine on time, otherwise I’m going to be in big trouble.”

“I used to brush my teeth and then be gasping for breath. Now that doesn’t happen. Now I play ping pong on Sunday nights. And billiards downstairs. I want to do everything.”

“It ruins my social life, because I have to wake up at 7 o’clock [to do a manual exchange] and then do it again at 11 o’clock and 3 in o’clock in the afternoon and then 7 o’clock at night, so I don’t go nowhere.”

Overall changes to health-related quality of life

“The big thing is the time involved in getting here, getting the four hours of treatment, and going home.”

“It’s not the best, but I guess it’s all I’ve got right now until hopefully a transplant comes along. Six to ten years is a long time to wait though. But I guess I’m stuck with this for now.”

“I think there’s flexibility and it’s one of the best things about home hemo. You can pretty much be a master of your own time, you know, and do it however you like.”

“It’s considerably more work to be on home hemodialysis, but I think the results, in terms of my health and how I feel, are worth the extra work.”

“I have a lot more energy and a lot more drive, I think, since I switched from the hemo to the peritoneal.”

“I get up in the morning and I’m done with dialysis….I don’t have to think about it or worry about it. I don’t have to spend four or five hours going on the road to the hospital and getting my treatment then coming back. So I think there are more positives with peritoneal dialysis compared to hemodialysis”.