| PROMs can enhance person-centered care. |
Symptoms and QOL are pertinent to CKD care. |
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“…as the level of kidney disease progresses, and they become more and more advanced CKD, then I think those symptoms can become more and more prominent and more important for the patients, not able to sleep at night, waking up several times at night to make urine because of lack of concentration ability or basically decreased appetite, leg cramps, a lot of complaints about leg cramps. And they wake up at night because of that. So all the symptoms start becoming more and more important. And we, as nephrologists, I believe need to pay more attention to them.” (physician 1, JH academic practice)
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| PROMs may identify symptoms and impairments which would not have been otherwise recognized. |
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“I could see if these are important symptoms that really crop up for some people…let’s say itchy skin, a person may not think that that has anything to do with kidneys, and if suddenly became a big, a real problem, it probably would be good - by doing the survey and telling the physician, it would point to those symptoms that otherwise they would not have thought of as kidney related.” (patient 5, CKD G4)
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“People have different personalities, so some people aren’t necessarily as forthcoming. This might help them be a little more open because they're like, well, I’ve already answered the question on paper. It’s not like they feel weirded out or anything if their kidney doctor is asking and confirming information that they’ve already provided already.” (patient 20, CKD G5)
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| PROMs can help identify the most significant issues that patients are experiencing. |
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“…part of the benefit of having a survey that’s done beforehand—and I certainly see some benefit to that—is that it at least helps frame the discussion. To me, it’s sort of like the questionnaire that still gets handed out in paper to new patients that it’s certainly not the only thing that we go on, but it at least helps frame a discussion. It gives me some sense of how the patient has been feeling the past few weeks or months. And we can use that as a jumping off point.” (physician 2, JH academic practice)
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“…I know that they have so much to do during the visits, this is something that might help them focus on things that are important to both of us.” (patient 9, CKD G3b)
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| PROMs could inform medication management and care planning. |
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“…to me, it would motivate my provider and myself to sort of say, is there anything I can do about this? Or is there anything I should be doing differently? Should I be, I don't know, being more active? Should I be losing weight? Should my medication be changed? I think to me, it just changes care because it makes you not just accept feeling crummy just because you have kidney disease. And I think that's kind of for me, how I would see it. Changing care. It’s just that sometimes you just accept feeling terrible because you think maybe there’s nothing you can do about it. But there probably is something you can do.” (patient 8, CKD G3a)
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| PROMs can be used to monitor changes in symptoms and QOL over time. |
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“From all of this, if we have five important symptoms, that patient would feel like physicians can say, I can see that we are having five important symptoms. So that will help me to be more targeted in reviewing medications, clarifying the symptoms…So that will be more, first of all, patient centered; second, targeted treatment, and measurable results, because next time, they could say that last time you had, for example, shortness of breath. It was 8 out of 10, and we made the changes in medication. How would you measure? I can see you measure it today 7, so we made some progress. Let’s see if we have room for improvement.” (physician 13,
non-JH
academic practice)
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| PROMs can increase patient knowledge of the impact of CKD. |
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“I follow a lot of CKD4 or 5 patients. I maybe could identify one or two patients who particularly said that with the symptom survey they felt that they didn’t realize how bad they were feeling, and because of that, it helped them come to terms with, okay, yeah, I think I do need to start planning dialysis, or we probably should start planning dialysis soon. And those are patients who are highly functional…because they can maintain their function, so they’re not realizing that these other symptoms are actually signs of uremia. So I think for those patients it helped them concretize or have acceptance of how bad they’re feeling, and it led towards better preparation.” (physician 15, JH academic practice)
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“I think it would get less educated people more in tune with what's going on in their body and why. I think maybe they should even say why. Like, a lot of itchy skin for me was only when my phosphorous was really high in my blood…People should know what's going on.” (patient 4, CKD G4)
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“…there might have been things—there—as I was filling it out. I remember thinking, gosh, I didn't know that this was—could be a kidney thing. I thought it was just me or something, or just, you know, how people live, or—so I-I just I even with fatigue I never would have thought maybe I'm more fatigued than anyone else…And so if I wasn't really asked about it, I could see myself not sort of—sort of discrediting it and sort of saying, oh, that probably has nothing to do with this.” (patient 8, CKD G3a)
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| PROMs could enhance patient-physician relationships. |
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“It could go either way. Some would say, oh gee, they’re making sure they get everything. Others would say, oh gee, I’m just a checklist.” (physician 3,
independent
practice)
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“I feel like that allows them to feel more seen and for their symptoms to be, or what they’re experiencing to be validated externally and be acknowledged by the provider even if there’s nothing that we particularly do to resolve or address these symptoms. For some patients, just the acknowledgement of how bad they’re feeling makes a difference.” (physician 15, JH academic practice)
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“…I've met so many people where they have such a hard time really connecting with their new care team, because it's all just so alien to them. I think this would be a great way to bridge that gap, make them feel heard, make them feel seen, allow them to really connect with their doctor, like, hey, we're here to help you. That's the whole point.” (patient 1, CKD G5)
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| There is uncertainty surrounding the role of nephrology physicians in assessing symptoms and QOL. |
CKD care has historically focused on numbers. |
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“I think I have witnessed, or overheard, or seen other visits where the visits are very factual, in the sense that we’re a specialty that relies heavily on numbers and trends. And it’s very easy to just sort of say well, six months ago your GFR was this and now it’s this. And the protein in your urine was this, and now it’s this. And this is the way you’re headed and just make it very factual.” (physician 4,
independent
practice)
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“It's because when I see the doctor I always have these blood tests that are looking at my creatinine and so on, which is probably much more important in terms of evaluating the status of my kidneys. We haven't—I'm trying to remember if we ever discussed symptoms in any depth, and I think the answer is no.” (patient 5, CKD G4)
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| Mental health is not routinely addressed in CKD care. |
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“I don’t screen them for mental health issues. I am very focused on CKD part of things, not that I discount the mental health part…The question is how much time do you have with the patient, and what is important to them when they bring it up to you? And I can tell you, in my practice it’s been rare that a patient will bring up the mental health issue spontaneously because I don’t always ask them directly about their mental health. I don’t screen for depression or things like that.” (physician 1, JH academic practice)
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“I can do the best I can. But I get to a point where they may need to see a professional. I’m not that professional. I don’t have the expertise. I don’t have the time to get the expertise. And I don’t want to get the expertise, to the degree that a psychiatrist would. Obviously, I want to be able to help, but there is a limit as a nephrologist. And I’m happy with that limit.” (physician 8, JH academic practice)
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| There is hesitation surrounding the role of PROMs in clinical care. |
PROM results may not be actionable. |
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“You may not be able to do anything about them or you may give the patient the impression that it's from the kidney disease and so you're sort of expected to resolve that, which may not be possible.” (physician 12,
independent
practice)
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“…if they’re starting to feel more symptomatic, what does that mean? It’s not like we’re going to start them on dialysis just yet. So I feel like it's also having realistic expectations of what we can do for these symptoms. Are these surveys just to guide us on when we should time them for dialysis? Or, for example, if they report that their muscles are more sore than before, what do I do at that point in time? Is that something I can address? Probably not. Is that something I can reverse? Probably not as well. Will I start them on dialysis at that time if they report worsening? Maybe not as well.” (physician 15, JH academic practice)
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| Some users prefer to discuss symptoms and QOL through direct conversation. |
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“…I feel like for most patients it's been working like just asking verbally face-to-face. I think some patients sometimes like for those symptoms, like mental health symptoms, maybe they may feel more comfortable filling out a questionnaire because maybe they don't feel comfortable opening up about certain symptoms to everyone, but I think maybe a combination of the two is probably best.” (physician 14,
independent
practice)
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“I prefer to report them in person. I prefer in-person physician visits, but if that wasn't available and I was having specific symptoms, then I wouldn't have a problem using that to get the information to my doctor, using electronic report to get the information for my doctor.” (patient 12, CKD G4)
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| Patient-physician relationships may impact the shared experience of discussing symptoms and QOL. |
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“Doctors are rushed often, and they focus more on the creatinine and the phosphorous and the hemoglobin and the PTH than sometimes they do on the patient. For those types of physicians, I think this could be very helpful. For those of us who also focus as much on the patient and who have longstanding relationships with the patients, it may not be as important.” (physician 6,
non-JH
academic practice)
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“Most of the kidney doctors I've talked to, they're interested in, in whole health and interested in - interested in kind of the whole body and not just the kidneys. And I think they also get that this is kind of a systemic disease that affects a lot of things, so I think they would be willing to, to talk to me about it.” (patient 9, CKD G3b)
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| There is uncertainty surrounding the sensitivity and specificity of PROMs. |
Data captured by PROMs can be non-specific. |
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“…so many of the symptoms of kidney disease are multi-system or spread across various systems that we really have to try to be comprehensive, in terms of asking about these things for our patients, although it's hard because so many of the symptoms are not specific to kidney disease necessarily, so it's hard to distinguish what's causing what sometimes. But I think it's pretty important. I think, you know, nephrology being a branch of internal medicine and we deal with so many interrelated problems, I think we have to do a pretty thorough job of that as opposed to more specialty, not so inclusive disciplines.” (physician 12,
independent
practice)
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“…I guess the only thing that I thought when answering them was that some of these things for sure could be attributed to almost anything else. And I guess that's not for me to worry about. But I did think to myself, well what, you know, what if I, I don't know had a loss of appetite because I don't know I was just stressed. And I tend to just not eat because I'm you know, I'm stressed about, like my kids' school or something? I don't know. And I just kind of felt like, how—at times I was like, how do I respond to this? Am I just keeping in mind my—what I think are kidney related symptoms? But that's hard to do, you know? Because you're just like a whole person.” (patient 8, CKD G3a)
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| PROMs may not capture all relevant aspects of patient care. |
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“It's important for me to know if that patient has problems with transportation, if that patient has problems with mobilization, if they have to use a wheelchair, scooter, or walker, or if they're going to be able to come to their appointments. And, the financial part plays an important role, if they're going to be able to come up to their clinic appointments and be able to afford the medications that are prescribed to them.” (physician 11,
non-JH
academic practice)
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“I think, one thing that might be worth adding or expanding the survey into is sort of asking about medication burden and just asking patients do they feel they, you know, do they feel burdened by the number of medications that they take or do they feel like they take too much medication?” (physician 12,
independent
practice)
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