This transcript has been edited for clarity.
Matthew A. Sparks, MD: Hi. I'm Dr Matt Sparks, and welcome to Medscape's InDiscussion series on chronic kidney disease. This is episode five. Today, we'll be discussing follow-up after the chronic kidney disease diagnosis. First, let me introduce our guests. We have Dr Clarissa Diamantidis and Dr Samira Farouk. Dr Diamantidis is an associate professor of medicine and associate professor in population health sciences at Duke University School of Medicine. Dr Farouk is an associate professor of medicine and medical education and a transplant nephrologist at the Icahn School of Medicine at Mount Sinai in New York City. Welcome both of you to InDiscussion. First, let's get to know our guests. Clarissa, tell us a little bit about yourself and how you got interested in nephrology.
Clarissa Diamantidis, MD: Hi, everyone. Thanks for having me. My name is Clarissa Jonas Diamantidis, and I'm a nephrologist who lives at the intersection of nephrology and internal medicine. I'm very excited to talk to you about this topic. I'm an associate professor of medicine, as Matt said, at Duke University. And clinically, I see patients at the Durham VA Medical Center in Durham, North Carolina. I am part of the internal medicine division, so most of my collaborators are internists. A lot of what intrigued me about nephrology came from my personal interest in health equity and health disparities. Frankly, I went into medicine to be a cardiologist, just like my Black Hispanic father who also did health disparities work. I came to Duke to do cardiology. I did my internal medicine residency at Duke, and when I was there, I developed a distaste for the way that, at least during my experience, cardiology was being taught. It was a lot of memorizing clinical trial acronyms and not a lot of patient-centered care, not a lot about education, and not a lot about what the patients are perceiving and their experiences. It was much more about following the evidence to the letter, which as we know, is very hard to translate into patient care and patient communication. I walked into a dialysis unit for the first time, and I would say 99% of the patients there were Black, and I was shocked. I started to do a little bit more investigation into some of the — what now seem very obvious — health inequities that exist in nephrology. And I developed a deeper and deeper interest in studying kidney disease and, most importantly, the upstream care of kidney health and how we can prevent those disparities. That's why I went into nephrology. Truth be told, I started out as a wannabe cardiologist, but I made the right decision, that's for sure.
Sparks: We're glad that you picked nephrology, and I'm also very happy to work with you day by day and learn from you. Let's move on to you, Samira. I want to hear about your journey and why you became a transplant nephrologist.
Samira S. Farouk, MD: Thanks for having me. Matt, it's great to chat with you and Clarissa, as well. My name is Samira Farouk. I'm a transplant nephrologist at the Icahn School of Medicine at Mount Sinai in New York City. My initial journey, I guess, is a bit similar. I am also ashamed to say that I wanted to be a cardiologist. I did a lot of cardiology research starting in medical school, and even early in my residency, I was really focused on a career in cardiology. I think like everybody else, my decision to pursue nephrology was very multifactorial, shaped not only by being really interested in the subject matter pathophysiology, but also the mentorship and the educators I met who were incredibly important. I was fortuitously paired with a nephrologist as one of my advisors early in residency, and I was inspired by him and the other nephrologist I met in our division at Mount Sinai. The rest is a little bit history as far as me getting into nephrology. The path to transplant was a bit different. I had never taken care of a patient with a transplant during my residency, or at least not in any way that stood out to me. During my first-year fellowship, as I started to take care of these patients, I fell in love with the opportunity to, as Clarissa mentioned, really provide patient-centered care. Transplantation is a massive journey for the patient, starting pretransplant. The peritransplant evaluation process is incredibly important and exhaustive, and then the posttransplant journey is its own story. I really wanted to be a part of that. It was a way to help patients who wanted to liberate themselves from dialysis — to allow them to do that. I don't think transplantation is the right thing for everybody. I see my role as helping patients choose what the right treatment modality is for them, whether that's transplant, dialysis, or conservative care. I love immunology, and I also love internal medicine. I see my role as the intersection of three things — nephrology, internal medicine, and immunology. And I'm very privileged to be able to practice this every day.
Sparks: We're again very privileged to have you in the field, and we have two cardiology converts. You are also two people I really admire in the field. We're going to go ahead and jump into this. I think the very first topic to hit is patient education. It's not uncommon to see a patient in nephrology clinic, and they don't have a very good understanding that they even have kidney disease. So, we'll start with Clarissa. How can a primary care provider be more impactful about talking about kidney disease with their patient?
Diamantidis: I think primary care is integral to any conversation about kidney disease. I view the primary care provider as the center of the wheel. And we, as specialists, are the spokes, right? The primary care provider, more often than not, is the provider who knows the patient better than anyone else. They're more aligned with their values. They know if they are having issues with their spouse and if they're having financial insecurity. Those sorts of long-term longitudinal relationships make the communication with the primary care provider about kidney health extraordinarily important. I may see a kidney patient once every 6 months, but the primary care provider has known this patient for years and years and is much more knowledgeable about context when the patient shows up in clinic. I would say, to be quite candid, discussing kidney disease is complicated, right? It's a complicated topic. It's difficult to explain. It's complicated sometimes even for nephrologists to understand what's going on. You know, as Samira alluded to, some of the brightest people I've ever met were nephrologists because of the complexity of the condition. If we take a step back and talk to our patients as if they were members of our family — not members of our family who are in the medical field, but members of our family as if we're sitting around at the table at Thanksgiving — we can understand where they are coming from in that moment.
What I mean by this is, do they have experience with kidney disease in their life? Do they have a personal story they can bring to the table? Many of our patients I personally interact with in nephrology clinic associate kidney disease with dialysis. Obviously dialysis is the end stage, and the most advanced stage of a very long continuum of kidney disease, much of which does not lead to dialysis. We should take the time to explain broadly what the kidneys do — they clean the blood, they help keep our blood counts up, and they help keep our bones healthy. The key is keeping it broad but also comprehensive about the importance of kidney health. Most important in primary care is discussing risk factor control. And these are the things most primary care doctors spend the majority of their time discussing; for example, high blood pressure. I say high blood pressure and sugar diabetes to folks I care for. We know we're talking about hypertension and diabetes, but we are also discussing these in the context of kidney health.
When we start talking about renal replacement therapy, it's good for the patient to have fundamental basics about kidney health, so I would say it's important to know some of the vernacular about discussing kidney disease. There's been lots of studies done to determine how we should describe chronic kidney disease to our patients. Of course, one thing I try to do is put it in the positive. So, instead of saying kidney disease, I discuss their kidney health. Rather than phrase it as this pessimistic kind of condition, let's preserve your kidney health. That's usually the language I use — preserving your kidney health as long as we can. Some people prefer to hear the term weak kidneys. I think there's been some work showing that the term disease can be very startling to patients when they hear it, particularly when we're talking about something that is an asymptomatic condition. We're just detecting it, typically with labs and urine studies. And so it's very challenging to describe a condition that is really just laboratory-based to a patient.
Farouk: I wanted to echo what you mentioned, Clarissa, about the complexity, and I think it's so important to understand how complex this topic is. When somebody is given a diagnosis of kidney disease, it is a life-altering event, and it is not just one conversation. I unfortunately see so many patients in the kidney transplant evaluation clinic, which means they have had an estimated kidney function value near or less than 20%, and one of their physicians has referred them to us for evaluation to see if they are a good candidate for kidney transplantation. I walk into the room and there is confusion about why they are seeing me today. I know these patients have been seeing primary care providers and nephrologists sometimes for years, and they still have a hard time understanding what the process is and why they need a kidney transplant. And again, because it is, as we say, a "silent" disease until dialysis is potentially indicated, these patients may not understand. Why are we saying they need this life-altering surgery? Why are we telling them they're going to be on lifelong medications that are going to suppress their immune system? We're telling them about risks of infection and cancer, and they don't fully understand. I think that's why it's so important to start these conversations as early as possible. I don't mean to imply that everybody with mild, chronic kidney disease needs to be educated about the benefits of transplantation. But the earlier we talk to these patients about their kidney disease and tell them what could happen and what might happen and what we think will happen, we can prepare them for what's to come. And then if they unfortunately meet eligibility criteria for kidney transplantation, now we can focus our conversation on the risks and benefits on kidney transplantation and everything that comes along with that. This is very, very different from the "I have kidney disease and this is what it means" conversation.
Sparks: It's really an important time for us to think about kidney disease and especially in this new era of The Advancing Kidney Health Initiative here in the United States. I want to talk about what it means to have kidney disease, why it is a marker for a lot of other things that might be happening in a patient's body, and what we can do to prevent and protect the patient who has kidney disease. I'll start with Clarissa on this topic.
Diamantidis: I would emphasize that kidney disease is part of the syndrome, right? It is more often than not a consequence of prolonged illness, and most often here in the United States related to prolonged hypertension or diabetes. It does not happen in isolation. It is the cardiovascular equivalent in your kidneys. Diabetes, heart disease, high blood pressure, kidney disease — it is all the same condition manifesting in different organs. That means that the consequences of these prolonged illnesses manifest not just in one organ at one time. It means that having kidney disease is a significant risk factor for cardiovascular disease. The fact that these pathologies, this injury, is happening in multiple organs at one time, unfortunately, it's almost a synergistic risk. We consider kidney disease a cardiovascular equivalent, but it is one of the highest risk factors for cardiovascular disease, akin almost to diabetes. Kidney disease does not occur in a vacuum. It is a consequence of a broader health condition. And as such, treating all the broader health conditions is integral to treating kidney disease. If you continue to live in a milieu that has continued illness, or high blood sugar or high blood pressure, the consequences of these illnesses will continue to rise and rise until you get this exponential risk. We know that if you have chronic kidney disease, you are more likely to die than you are to progress to end-stage kidney disease; you are more likely to have a cardiovascular event than you are to progress to end-stage kidney disease, and not to derail too much of course — these risks are disproportionately seen in more vulnerable and minoritized populations.
Farouk: I want to briefly add to that. I think it's so important to share everything that Clarissa just shared with our patients to empower them to be partners in their care. Oftentimes, we write these essays in our notes about what we can do to prevent risk or what is driving the risk of kidney disease without fully explaining what it means to the patient. I think it's so much more powerful to tell a patient that if you can improve your blood glucose control and your blood pressure, you can protect your kidneys, rather than saying the two things separately. They may not really understand the connection. Motivating patients and trying to show them what we already know in a way that is understandable can be very powerful. This is important in the transplantation world, as well. If somebody has kidney disease in the setting of having diabetes for a long period of time and they don't understand this, how will they understand that after transplantation, when their diabetes is likely to be harder to control, they still have to focus on it. Otherwise, the new kidney may be susceptible to the same problems as their native kidney. It all comes back to being transparent and communicating what we already know and discuss in our medical circles, and pulling our patients into it so they can understand what we are thinking about.
Diamantidis: That's a great point, Samira. As you were speaking, I was thinking about this, which came up in a study related to promoting equity in kidney transplantation. The social worker was discussing some of the conversations she was having with potential kidney transplant recipients. Part of that study was educating patients about we call all the facts. What do the kidneys do? What does it mean for you? What can you expect, etc.? We were talking about building rapport and she said, "Patients do not want to know what you know until they know that you care." And I think this is on point with the importance of primary care providers. It emphasizes the role that primary care providers have in being that person who cares, and it's not that nephrologists don't care. I'm going to get hate mail, but we don't have that same longitudinal long-term relationship that many primary care providers have with their patients. All I would say is don't underestimate the power of this in empowering patients in their kidney health. Patients do not want to know what you know until they know that you care.
Sparks: I want to move to transplant. Obviously, we have a transplant nephrologist here who can really shine some light into this. Transplant is the best therapy if a patient is aligned with this goal and is eligible. How can a primary care provider advocate for the patient so they have a possibility to get a transplant?
Farouk: If I had to say one word, I think it would be planning. These conversations and all the planning we've been discussing really starts in the primary care environment with their primary care provider they've known for many, many years, who they trust and who they know really cares about them. It's hard to think of one specific thing. I think if they're starting conversations about their kidney health, transplantation is something that may come up.
Why is the planning so important? Because all of this not only physically takes time, but emotionally and mentally, it is a huge conversation. When somebody walks into our evaluation clinic, I'm telling them we're going to plan for surgery, and we're planning for lifelong medications. This is what's going to happen in the perioperative period. This is what you can expect in the first 6 months. This is what you can expect in the first year. I would say, on average, for patients with a kidney transplant, their medications double, if not triple, in the early transplantation period. Unfortunately, these medications are indicated their entire life. If we don't explain this to the patient and give them time to digest it, we're not really setting them up for a successful transplant journey. That's just the initial visit. Another reason why planning is so important is that the evaluation process takes time. There are many patients we meet who say they're here today to put their name on the kidney transplant waitlist. As much as I wish this were the case, it is unfortunately not the case. There is a very lengthy evaluation process to ensure the patient is a safe candidate from a medical standpoint. This includes a very, very long list of testing that I think many other providers may not be aware of. It is all cancer age-appropriate screening. It's extensive cardiovascular testing for the majority of patients. It is a complete social screen. There is a financial screen, there is a meeting with a nutritionist, and there is a meeting with a surgeon. They're usually with us in the clinic for at least 4 or 5 hours for that initial visit. They go home with a long list of testing that needs to be done. On that first visit, we draw sometimes up to 20 tubes of blood, and that is not only for initial testing but also for immunologic testing to try to find the best match for them. Without going on and on, it is a long process that takes time, and we need the time to explain to patients what they're about to go through.
We encourage everybody to bring a support person or their support system with them because it is incredibly overwhelming. Again, just like getting a new diagnosis of kidney disease, hearing about getting a kidney transplant — whether you're going to do it or not — is a life changing event itself. And if they're not really sure, sometimes I ask the patient, do you want a kidney transplant? After they've heard everything I've said, maybe they're not sure. If they aren't sure, I don't think it's worth it in that visit to move forward with all of the blood draws, wasting their entire day. I think it's higher yield to say, hey, go home and think about this. Talk to your family; see if there's any potential living donors. Come back and see me in a month and we can talk about this again. I think in that context, 1 month is nothing compared to pushing someone forward to do something they maybe don't want. I think it's so important to have that shared decision-making process. It's a bit cliché, but personalized medicine is really, really important in this space. I don't think we can say it enough, even though we say kidney transplant is the best treatment. Yes, outcomes are the best, but it is not the best treatment for everybody. And if we don't think about that, we're really doing a disservice to our population of patients we care for.
Sparks: I'm going to ask one more question to Clarissa and then wrap this up. This is about acute kidney injury (AKI). You're the primary care provider. You go into a patient's chart, and they have had a few hospitalizations over the last couple of years. You trend their creatinine levels and notice they had an episode of AKI on both of those visits, but now their kidney function based on their creatinine is normal. What does that mean, and how does that impact their kidney health?
Diamantidis: That's a great question, Matt. I work in this realm a little bit, and I would tell you that AKI is an undercommunicated diagnosis. It's something that we as clinicians may recognize, as Matt alluded to, maybe retrospectively, or hopefully in the moment. But we do a very bad job of communicating it to our patients. Viewing them as partners in care is critical because the consequences of AKI are numerous. Frankly, if you have an episode of AKI, it puts you at risk for recurrent AKI. It puts you at risk for new or progressive kidney disease or end-stage kidney disease. It is a cardiovascular risk factor. It puts you at risk for high blood pressure, and this is even if your kidney function returns to normal. So although we may look at AKI and say, well, it happened and it's over, and maybe we don't need to talk about it, I would argue that it's critically important to talk to patients about their episodes of AKI to discuss ways to lower their long-term risk of getting AKI again or preserving their kidney health. These are things like avoiding nonsteroidal anti-inflammatory drugs, or if they're dehydrated — or as we as nephrologists would say, have volume depletion — maybe holding some of their medications to reduce their risk of having AKI again. The more often you have AKI, the higher the risk for long-term kidney trouble.
Sparks: This has been a fascinating discussion today. We've had two national experts, Dr Clarissa Diamantidis and Dr Samira Farouk, discussing follow up after the diagnosis of chronic kidney disease. This is Dr Matt Sparks for Medscape InDiscussion.
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Cite this: A Chronic Kidney Disease Diagnosis: Now What? - Medscape - Nov 10, 2022.