Table 3.
Representative quotations
| Theme 1: Knowledge gaps and misperceptions about KDPI | |
|---|---|
| Patient quotes | Clinician quotes |
| “I saw those paper, any, sometime in the process they explained me, but I don’t remember completely what is involved in KDPI.” (participant 19; 65-y-old, male transplant candidate) | “... often even though we actually educate these patients you know during their initial intake process, many patients don’t remember and then tend to just be focused on the, well you know, having the best quality kidney. So it takes up a lot of you know saying the same thing 3, 4, 5 times, and sometimes it sticks and sometimes it doesn’t.” (participant 37, male nephrologist)“... on the spot, in real time they do have education sessions. But when these folks get listed, get educated and then the time that I call them, or my coworkers call them, there, you know, could have been a huge amount of time lapse.” (participant 34, male, nurse)“... the language surrounding it, like trying not to make it so scary. Like right off, so they’re not, they’re not uninterested right off the bat. That I think, that’s the probably the hugest thing for me.” (participant 53, female nurse)“... that, you know, is a complicated process to get your patients to understand the level of granularity that, that comes with high KDPI and the concept of EPTS.” (participant 70, male nephrologist) |
| “Well I know that they, I’ve heard the term but I’m not sure if I remember the whole aspect of what it is. I mean I know I know it’s an index, well actually I might’ve forgotten about what it is. I remember in 2009 hearing about that for the first transplant. I might’ve heard about it in 2017 but it was so fast.” (participant 18; 46-y-old, female transplant recipient) | |
| “It’s basically a number based upon the donor’s activity before death or, as a living donor, at that moment. Whether or not he is a high risk. Those variables can be age, how they died, whether they had spent any time in prison, that sort of stuff. Did they have any blood pressure, or heart disease, or a possibly diseased kidney that they are trying to donate as well. So all that good stuff.” (participant 11; 50-y-old, male transplant recipient) | |
| Theme 2: Limited awareness of consent status and limited role in decision making | |
| Patient quotes | Clinician quotes |
| “I’m really not sure [about KDPI > 85]. The thing that we talked about, what makes a kidney lower quality was the difference in the cadaver and the live donor. So it was that, that’s the thing that we talked about, that having a live donor, all of those kidneys are of better quality than the cadaver. That’s all I understand about that.” (participant 35; 67-y-old, female transplant candidate) | “... I’m calling some patients who are literally like surprised that they’re listed.” (participant 57, female nurse) |
| “We have an internal criteria for who would qualify for those [KDPI > 85]. So we talk about the kidneys being at increased risk for delayed graft function, and the potential to have a shortened graft life, but in general what we do is see the patient, briefly review them, and then determine if they meet criteria for those organs based on our center criteria.” (participant 55, female surgeon) | |
| “...well the team that I’m with they didn’t offer that as an option. So they didn’t say much.” (participant 21; 44-y-old, female transplant candidate) | |
| “If they’re a suitable candidate we would offer them to be patients who we believe are candidates for high KDPI kidneys. We don’t offer them to everybody.” (participant 32, male surgeon) | |
| Theme 3: Consent preferences change over time and depend on health status, age, and experiences on dialysis | |
| Patient quotes | Physician quotes |
| “I would have to decide on how I feel at the time. So it would, if I think that I need... if at that moment, I have to decide, um, my quality of life and being a candidate for a different kidney if I wait for 2 y, that all depends on how I’m feeling at that moment. That’s all I can say.” (participant 60; 56-y-old‚ male transplant candidate) | “... If they’re running out of dialysis access, if they got advancing comorbidities, you know, those patients who would certainly benefit from shorter waiting time” (participant 70, male nephrologist) |
| “... when they are on the list, they come in once a year as waitlist candidate to be seen, and then that whole consent process is repeated.” (participant 36, male surgeon) | |
| “You know I mean I can say that when I first went on dialysis or back on dialysis when my kidney rejected, I might’ve been a little more likely to um you know turn a higher risk kidney down, but as time has kind of gone on, it’s kind of like wait a minute I’ve been waiting 17 y at this point, I’ll take whatever I can get.” (participant 20; 37-y-old, male transplant candidate) | |
| Theme 4: Patients underestimate the survival benefit of transplantation over dialysis | |
| Patient quotes | Physician quotes |
| “... Well one of the things that I’d like to say is this, keeping it in mind that transplant is a form of dialysis. You’re not cured when you are transplanted. It’s another modality that you’ve chosen to respond to your chronic kidney disease.” (participant 16; 55-y-old, female transplant recipient) | “... I think what some of the patients don’t understand is how bad is dialysis, to stay on dialysis, how detrimental it is to, that is to your health over getting any kidney, you know… If you have an effective kidney that’s working, you know, 3 y, 5 y, 10 y, that’s, any number of years is better than being on dialysis, and I think getting that point across to community nephrologists, the patients themselves is the most important.” (participant 45, female surgeon) |
| “You know what, I personally believe it’s either could work depending on the person. I, I have seen it from both ends you know. People thrive very well with the transplant and those with dialysis thrive just as well. So, I personally believe it could be either way, depends on the person.” (participant 21; 44-y-old, female transplant candidate) | |
| “... so like the average person who gets a 99% KDPI kidney has a 60 plus percent 5-y survival, and the average person who stays on dialysis for that 5 y has a 40% life expectancy at 5 y. It’s a reasonably large difference. And I think by, by creating this comparison that says my kidney is better than yours we have set up, we have essentially created a reference framework that encourages transplant centers and patients to decline kidneys.” (participant 51, male nephrologist) | |
EPTS, estimated posttransplant survival; KDPI, kidney donor profile index.