Patient Counseling in C3GN: From Disease Education to Shared Decision-Making

Announcer Introduction:
Welcome to On the Frontlines of C3G on ReachMD. On this episode, we’ll hear from Dr. Gates Colbert, who’s an Assistant Clinical Professor at Texas A&M College of Medicine and a practicing physician with the Kidney and Hypertension Associates of Dallas, located at Baylor University Medical Center in Texas. He’ll be discussing best practices for counseling and educating patients with C3 glomerulonephritis. Here’s Dr. Colbert now.

Dr. Colbert:
In my experience, I first like to lay out what their disease is and how it is impacting their kidney function, and I gather how interested the patient is in that basic science talk and also what their clinical symptoms may or may not be because, unfortunately, a lot of patients with C3G may have no symptoms as their disease is worsening. So we first just have to talk about what this disease is and how is it impacting their kidney function. Then we have to talk about what our treatment plan is, and we have to say that the treatment plan may be temporary, and over time, we have to augment it depending on how their disease changes. And so we need to just start to set expectations of, “This is we’re going to try first; just because we move on to another treatment plan doesn’t mean that you have failed or that it wasn’t good enough for you.” We have to talk about, “This disease can wax and wane over time.” “It could be relapsing where you have some recurrence of kidney flare, a recurrence of proteinuria and worsening of GFR, and then things calm down for a while.” And so, unfortunately, this disease can be an up-and-down experience, and so just trying to lay out all of those ahead of time for our patient—I really try to do that to help them understand that even though things may be changing in the future, this was expected by your treating clinician and nephrologist from the very beginning. And we do this to also allow the patient to digest it, to understand that their treatment today may be a different treatment in six months or one or two years, and that’s okay because we are tailoring our treatment to what your kidney needs are at that time.

Additionally, we want to have good feedback from the patient. We want to ask them what their questions are, what their understanding is, what they are worried about, and what sort of side effects they have previously had with any of the medicines that we want to treat because some of the backbone treatments of C3G are steroids and MMF, which are common medicines for many other diseases, both nephrologic and not.

We want to make sure that we are meeting the patient’s goals as best as possible. We want to understand what their ultimate goal is and how can we meet that on an intermittent level or fully at a time, and just try to really be on the same page with our patients—that we are trying to meet everything that they want, that we are shooting towards a cure with their situation, and we’re trying to use the best tools we have available. Also, I think that if you have availability to use new medications that are being studied—some that are newly approved by the FDA—I definitely think that you want to offer that to your patients as a possibility. And if you feel uncomfortable with that, consider referring to a glomerulonephritis clinic or a research academic center that has those possibilities or clinical trials going on because with our current guideline-driven therapy, we don’t have a cure for these patients yet. But hopefully, in the future, we’re getting closer and closer. 

Set up a space where your patient feels comfortable talking to you about their goals, about their fears and what their experience is currently, and allowing them to speak about their experience in the future, because when you have a chronic disease that has no cure it’s, it’s a tough place to be as a patient, and so we want to make sure that the nephrologists and the treating clinician is the first person they go to with questions, concerns and you know, hopes about this disease and the best treatment plan forward. 

Announcer Close:
That was Dr. Gates Colbert talking about best practices for communicating with patients who have C3 glomerulonephritis. To access this and other episodes in our series, visit On the Frontlines of C3G on ReachMD dot com, where you can Be Part of the Knowledge. Thanks for listening!