Shifting their focus to chronic graft versus host disease, panelists emphasize the importance of early identification and diagnosis.
Corey Cutler, MD, MPH, FRCPC: We’re going to jump over to chronic graft-vs-host disease. Linda, tell us a little about the spectrum of clinical manifestations we can see in chronic graft-vs-host disease [GVHD].
Linda Perry, PA-C: First, when educating my patients, I always tell them that chronic GVHD can affect almost any organ system at virtually anytime. Some of the main organ systems we see affected by chronic graft-vs-host disease include the skin, the eyes, the mouth, the joints and the fascia, sometimes the lungs, and even the genitalia. The presentation is quite variable. When describing chronic GVHD to my patients, I sometimes mention that there are some similarities with rheumatologic diseases. Oftentimes people are familiar with lupus or scleroderma. We mention that correlation.
As far as the main systems go, most frequently we’ll see the skin, eyes, and mouth affected. Skin symptoms can be quite variable. [We’re looking at] superficial and inflammatory features with lichenoid changes; superficial sclerosis; deep sclerosis, which we see with the sclerodermatous GVHD, indicating fibrosis and more end-organ damage that we’re trying to avoid. With ocular symptoms, classically it’s dry eyes, although we’ve definitely seen some patients present with excess tearing as a manifestation or almost like a prodromal sense.
Of course, there is oral graft-vs-host disease, with lichenoid changes or severe cases manifesting as ulcers. One of the key points I try to get across to my patients is that this can affect the lungs as well. But oftentimes they’re not going to develop symptoms unless the disease is far progressed. We really stress the importance of pulmonary function testing early on post-transplant at 3 months, no later than 6 months post-transplant for that initial screening test. There’s a lot of variability within chronic GVHD presentation.
Corey Cutler, MD, MPH, FRCPC: You touched on early diagnosis. For the lungs, we have a screening test. What do you tell your patients about reporting symptoms early and coming back to the transplant center regularly, as soon as they have a symptom that’s been poorly explained?
Linda Perry, PA-C: It’s really a challenge because, with chronic graft-vs-host disease, you’re not necessarily going to pick up [the disease] exactly when it’s happening. In acute GVHD, the patient might be at the center and their symptoms are starting the next day. But in chronic GVHD, these patients may not be seen for a month, even 2 months, depending on how well they had been doing. It can be very hard to pick up. The key is to educate patients early on before it’s expected to happen, as they’re tapering their immune suppression.
When they come off immunosuppression, remind them that this is a time when you may see chronic GVHD symptoms start to develop. Review symptoms top to bottom, and remind them of the different things that can be seen. A lot of the symptoms are so subtle that patients don’t know what they mean, so they can go unmentioned or overlooked. The bottom line is I tell [patients that] if there’s anything new or different that they’re not sure about, please call and let us know, and that we’ll let them know if it’s something they can push aside or if it is something that needs to be addressed.
Yi-Bin Chen, MD: I couldn’t agree more. Also, there’s a little psychology there. At that point, patients are weaning away from weekly visits. As you say, they’re being seen every month or every other month, depending on where they live, and they don’t want to be sick. They’re done with the close follow-up. They don’t want to come back, so they blow off this and that. It takes a lot of education. I’d put a lot of the onus on us as the providers [because] patients look well and talk a good game. But if you don’t do a comprehensive physical exam each time, you’re going to miss things. You’re going to miss the beginning of changes in the mouth or early scleroderma of the skin in fascia if you don’t do a comprehensive physical exam each time. There’s education on both parts on patients and providers alike for early recognition of chronic graft-vs-host disease.
Corey Cutler, MD, MPH, FRCPC: It’s important to communicate that to our community providers and partners, because we’re often not the ones who need to do that comprehensive physical exam.
Transcript edited for clarity.