Monitoring and Educating Patients With GVHD


Experts on graft-vs-host disease discuss patient monitoring and education, and a patient details his experience with GVHD.


Preet M. Chaudhary, MD, PhD: Lakshmi, how do you usually monitor your patients after transplant? How often do you see them? What do you test them for?

Lakshmi Savitala-Damerla, PA-C: If they’re newly transplanted, we keep a close eye on them and monitor them pretty frequently, twice a week. Then we slowly taper them off—once a week, every 2 weeks, once a month—as they’re doing well and leveling off with their new immune system. Then we monitor them by asking questions. After a while, they understand the questions we ask. Even before we go to the room, they have an idea and jump into the systems that are bothering them. In terms of diagnostic testing, there are no specific markers per se. For some things, there are biomarkers you can use. For this, there are none. There are some indirect markers. There are no direct markers, so it’s based on cell counts, history, and physical exam. It’s more of a clinical diagnosis than a diagnosis based on lab values.

Preet M. Chaudhary, MD, PhD: Hector, following your transplant, when did you start experiencing graft-vs-host disease [GVHD]?

Hector Cuevas: It was after almost a year. I started feeling shortness of breath. I had a bit of a rash, but it was more shortness of breath. I’d get tired.

Preet M. Chaudhary, MD, PhD: Didyou approach Dr Tam at that time?

Hector Cuevas: Yes, I went in for an appointment with Dr Tam. He said I couldn’t go home. I had to stay at the hospital.

Preet M. Chaudhary, MD, PhD: Dr Tam, can you discuss the staging of chronic GVHD?

Eric Leon Tam, MD: We use the NIH [National Institutes of Health] Consensus Conference staging for chronic GVHD, which was updated in 2014…. Every organ system has typical and atypical symptoms. We have defining symptoms that you can diagnose as chronic GVHD if patients have those symptoms. Mr Cuevas had bronchiolitis obliterans. That was 1 of the diagnostic criteria for lung GVHD. That was based on imaging primarily and on pulmonary function, so we admitted him and started treatment.

Every organ system has different criteria. In the skin you have a sclerotic picture, sometimes in sclerosis as well. There are a lot of skin changes that are very defining for chronic GVHD. Some of the other organs are a little more difficult. Remember, GVHD is a systemic disease for the most part. Sometimes you have to look in different organs to get enough evidence to say that clinically this looks like graft-vs-host disease. We can biopsy as well. A tissue biopsy can help, but it’s often not as helpful as putting together the overall clinical picture.

Preet M. Chaudhary, MD, PhD: Hector, how did you and your family get educated about GVHD?

Hector Cuevas: Mostly it was from Dr Tam. My wife would also look it up the symptoms on Google.

Preet M. Chaudhary, MD, PhD: Dr Tam and Lakshmi, what resources do you use in your practice to educate patients about GVHD?

Lakshmi Savitala-Damerla, PA-C: Essentially, education starts the moment the patient is deemed to be a transplant candidate. You start talking about what the transplant is and the most common complication, which is the GVHD. It starts with that. Each visit, from consult to finding a donor to getting their consent, is the pretransplant phase. We constantly talk about graft-vs-host disease—the signs, symptoms, and percentage. A good 20% to 40% of our patients will have graft-vs-host disease, whether it’s acute or chronic. After they’re done with the transplant, at every visit we’re screening for these. After a while, the patients understand. Occasionally you’ll have a patient who says, “I don’t know what you’re talking about.” The education restarts, so it’s an ongoing education about what graft-vs-host disease is and how to identify it earlier.

Preet M. Chaudhary, MD, PhD: Dr Tam, do you have anything to add?

Eric Leon Tam, MD: I agree. We try to introduce it early. We have to when we talk about transplant and the risks and complications. When they’re diagnosed with leukemia and going through chemotherapy, with the prospect of transplant before them, some of those details get lost. Sometimes they forget. We constantly remind them. Once they’re done with the transplant and being followed as an outpatient, we start reminding them. Patients will ask us, “What do I need to look out for?” This is when we go through the typical symptoms to look out for.

Transcript edited for clarity.

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