Table 3.
Illustrative quotations about wearable RRT devices from concept elicitation interview participants
| Domain/Responses | Participant Quotation (Current Dialysis Modality) |
|---|---|
| Knowledge | |
| Heard of wearables | “I heard that it is pretty much just like a PD machine, and it dialyzes as you go, and its battery operated … It allows you to be not worried about going into a center.” (ICHD) |
| Not heard of wearables | “For dialysis, no. But I am a diabetic, and I do have a wearable continuous meter.” (PD) |
| “Not this type of wearable device. Heard of something like a pacemaker.” (HHD) | |
| Initial reactions | |
| Strong interest | “It sounds 100% great. When will it be available?” (ICHD) |
| “I would be very interested … it means I wouldn’t have to get up every other day and go into dialysis. It would be more convenient. I could get out and do what I want to do.” (ICHD) | |
| “If I could have a device in a backpack that I can make discrete that would allow me to travel, I would definitely do it.” (HHD) | |
| Moderate interest | “I actually think it’s great, but it depends if you are OK carrying the device with you … it can be more tiring carrying the device than you expect.” (ICHD) |
| “Theoretically, I’d be very interested in it, but I would have to know a whole lot more about the actual device … But the idea of having more freedom to be able to do stuff and not being tethered to the machine as long as I am almost every day is very appealing.” (HHD) | |
| “I would be interested to see how it goes. I never want to be the first one to use something. I would wait on the sidelines for a good while.” (PD) | |
| No interest | “I accepted the fact that I’m on dialysis, that I have to do dialysis to stay alive. No, not for me … Plain and simple, I would not be interested in it at all.” (ICHD) |
| Potential benefitsa | |
| More freedom/ability to be active | “Just a general overall increased quality of life.” (ICHD) |
| “You’re not tied down three times a week sitting on a chair and not [using] one of your arms. To me, it sounds like it could be something very positive.” (ICHD) | |
| “The biggest benefit would be freedom from the machine. You kind of normalize dialysis, but the reality is that you got to do it to stay alive. So, you fit that schedule into your life.” (HHD) | |
| “Mobility. Being able to move around and get things done without having to stay in one room … It [would] just [be] a blessing … if it’s able to give me a little bit more freedom.” (PD) | |
| More independence | “Being self-sufficient would be the ultimate benefit.” (ICHD) |
| “Well, depending on the machine and how it’s actually designed … to be able to be more self-sufficient and independent, to not have to be stuck in my house all day long.” (HHD) | |
| Fewer symptoms | “I experience dizziness, shortness of breath, fainting, so [better symptom control] is important.” (ICHD) |
| “…fewer symptoms is really important because, for me, I’ve had episodes where I have a sudden blood pressure drop … and my stomach starts hurting, and I start sweating. And I start getting really short of breath, and I feel like I’m going to faint. My heart starts racing, and it’s a pretty painful and a little scary. It’s almost like a near death experience.” (PD) | |
| Fewer medications/diet restrictions | “Needing fewer medications and better control of blood pressure are close to the top of the list for me, because … I’m on four different blood pressure medications, and it’s a fight to keep my blood pressure down.” (ICHD) |
| “Not taking the phosphate binders would be a benefit. They are big pills.” (HHD) | |
| “Being on dialysis and having a very strict diet on top of being diabetic is stressful. So, if I’m able to eat a little bit more things that I would like and drink a little bit more because it’s hot in the summer…without it actually causing harm to my body, then that’s a benefit.” (PD) | |
| Potential harms or downsidesa | |
| Infection | “I worry about infection. I have an autoimmune condition so I’m more vulnerable.” (ICHD) |
| “My biggest concern would be the infection … with catheters. I had infections with [my dialysis catheter] … which was very annoying, very painful, and potentially extremely dangerous. I would be very worried about any kind of wearable device that was attached to a hemodialysis catheter. I’d also wonder, it would probably have to be a chest catheter as well I assume, or neck. That certainly would worry me.” (HHD) | |
| [Reflecting on experience with peritonitis]: “Yeah, I had to stay in the hospital. They filled me up with antibiotics. I don’t want to go through that no more.” (PD) | |
| Device disconnection | “I’ve had needles pulled out on accident in hemodialysis, and the amount of blood that came out of those little holes was a lot. I mean it was like a murder scene. Now imagine a tube … that you guys are probably going to be using. You could bleed out. And you can catch it on things. And also [get] an infection.” (ICHD) |
| “The catheter becoming accidentally removed if it’s connected to the bloodstream. This’ll cause bleeding, pain, and possible infection or even bleeding out. Especially if you’re on heparin or something. I mean forget it.” (ICHD) | |
| “Catheter may become accidentally removed or disconnected … that is really scary.” (PD) | |
| Lack of supervision | “…if you ever had a problem, you’re not with any kind of professionals that can fix the problem.” (ICHD) |
| “So, if it stopped, I’d want to be around somebody. I’d want to be able to get to my dialysis center or if you were out of town then what do you do?” (ICHD) | |
| Feeling self-conscious | “…when I work, I don’t want things getting in my way and, in certain social settings, that’s kind of a downfall. It’s like, I’m sorry, but people do look down on people that are handicapped. Somebody in a wheelchair, or somebody’s got a big old machine or oxygen in their nose. And if you trying to do work, you’re trying to give them business….. You might lose an account because people discriminate, and they don’t say why. I am a freelancer. And if I go to a client and then they see that, this tube and a machine on me, they’re not going to pick me again because they think I’m too sick to do the job. That’s why I don’t mind going to the center, because once I’m out of there, nobody knows I have dialysis.” (ICHD) |
| “I’m still young. I don’t necessarily want to walk around with the tube hanging and people asking questions.” (HHD) | |
| Return to clinic when device not working | “Then, [the] device may stop working, and you have to adjust your mind to going back to in-center. That just becomes a disruption, rethinking everything, trying to get the schedule that you need versus the schedule they can give you.” (HHD) |
| “[What would be of most concern is] when something breaks with the device and getting it fixed and restoring regular treatment.” (PD) | |
| “…if [the device stops working], you may need to go to another form of dialysis for a period of time. That one could be tough. Like I said, it’s a big change, a big risk going into the clinic if that’s the one that you have to do.” (PD) | |
| Concerns about device effectiveness | “For me, it all depends on its effectiveness. What’s the point of it if it’s not as effective and requires more maintenance and care than what I have to do [at] my three times a week, three hours a day center?” (ICHD) |
| “I would question how the machine knows how much fluid to take off. Because if you take too much, then you end up cramping … Then if you don’t take enough, you end up getting sick and possibly end up in the hospital.” (ICHD) | |
| Concerns about clinician knowledge of the device | “I would just hope that they would have the health care professionals properly trained so that it won’t make us feel like outcasts when we have a problem [with the device].” (PD) |
| “Trying to imagine dealing with a hospital situation with a wearable artificial kidney would be very, very scary because they won’t know anything about it. They’ll want to put you onto what they know, which is going to be your standard in-center thing. They won’t know how to deal with it. It would be the scariest thing I could imagine having to deal with.” (HHD) | |
| Comparison to current modalityb | |
| Wearable better | “It would be a huge improvement in quality of life, I wouldn’t have to worry about fatigue half the week, I wouldn’t have to worry about nausea and not being able to eat.” (ICHD) |
| “I would try it right away. It would help me to get back to school. I’m keeping a job offer waiting. I mean, this would just help me to get back into those things, versus what I’m doing right now. Let’s say you've got a meeting late in the night, and you’ve got an early morning class the next day … Sometimes your schedule is just that busy, and so this [device] helps to be able to do that.” (PD) | |
| Unsure | “I think it could possibly be better even though it has its downsides.” (ICHD) |
| “It sounds like it is less painful. You don’t have to stick yourself with needles. But I think I would stick to what I am doing.” (HHD) | |
| “Advantages with PD and wearables are similar because you do PD at home. So, it’s similar to the wearable because your life isn’t completely revolving around treatment.” (PD) | |
HHD, home hemodialysis; ICHD, in-center hemodialysis; PD, peritoneal dialysis.
a
Potential benefit/harm mentioned by at least two participants. Potential benefits mentioned by one participant were better blood cleaning (HHD) and fewer supplies (HHD). Potential downsides mentioned by one participant were cost (ICHD) and always having something attached to you (PD).
b
No participants identified their current dialysis modality as definitively better than a wearable device. No PD or HHD participants identified a wearable device as definitively better than their current dialysis modality.