Educating Patients and Physicians on GVHD

Bart L. Scott, MD:We educate patients pretty aggressively about what the symptoms of acute GVHD [graft-versus-host disease] are, which would be skin rash, GI [gastrointestinal] symptoms with nausea, vomiting, diarrhea, and then liver function abnormalities. We follow patients at least weekly with liver function tests, and we instruct all of our patients that if they develop any rash or any GI symptoms, to contact us immediately. There’s always someone available 24 hours a day, 7 days a week. So, if patients need to be seen on an urgent basis and it’s the middle of the night on a Sunday and they have some GI symptoms, we can arrange for them to be seen. We have a nurse for each transplant team who fields all of the telephone calls, and we try to get patients in as soon as possible for symptoms of graft-versus-host disease.

We’ve had clinical trials for both upfront diagnosis of GVHD and then for steroid-refractory GVHD, and we tell patients basically this is a potential option for you. We also offer what might be considered standard treatment approaches, and hopefully they’ll be interested in participating in the trial, and if so we would enroll them.

How do we manage a patient’s expectations regarding the care of graft-versus-host disease? When they initially present, many of the factors that are involved in their treatment are unknown. The initial treatment for most cases of acute GVHD would be steroids, and some patients are steroid refractory. And if they are, they typically have a prolonged hospital stay. They can typically have many symptoms related to that. So we try to be honest with them about the severity of the symptoms and what their expected response rates might be, based upon the initial presenting symptoms.

What advice would I have for physicians who are outside a specialty academic center for managing GVHD? The most important aspect of that would be making the diagnosis in a timely manner. That I find is the rate-limiting step in getting patients on an appropriate therapeutic intervention. Many times when patients present with graft-versus-host disease, it’s not recognized, and they often go untreated for weeks, sometimes months. And time to treatment is an important component of a positive outcome for graft-versus-host disease.

Transcript edited for clarity.