Expert perspectives on how best to educate patients and caregivers on graft versus host disease symptoms and quality of life.
Corey Cutler, MD, MPH, FRCPC: What do you tell patients about graft-vs-host disease [GVHD]? What do they ask you when they’re getting ready for their transplant and you’re describing this somewhat nebulous scenario that’s hard for patients to understand if they haven’t had a transplant before? What do you tell them, Linda?
Linda Perry, PA-C: In 1 of my roles as a PA [physician assistant], I teach our pretransplant or preadmission transplant education class. At that point, the patients have for the most part gone through their consents, they’ve met with their physicians, and they’re basically a week or so away from admission. I use that as an opportunity to review some of the basics of acute GVHD as well as chronic GVHD. I spend more time talking about acute GVHD because…admission is a week or so away. I find that a lot of patients hear the information but don’t necessarily grasp it.
During our transplant education class, we have the opportunity to have caregivers involved as well. Many times the caregivers aren’t part of that initial consent process. We review the details behind acute GVHD—the mechanism, that it’s a T-cell–mediated disorder, the basic signs and symptoms, talking about the skin rash, the liver function abnormalities that we’re in charge of monitoring, and the GI [gastrointestinal] symptoms that may occur. One thing we stress is the importance of letting [physicians] know right away when these symptoms occur. Although it can happen during their admission, oftentimes acute GVHD is going to present after discharge.
A lot of times patients want to know what they can I do. One basic thing they can do besides being compliant with their immunosuppressive regimen is to report in a timely fashion the symptoms they develop, especially GI symptoms. Take the time to go through the basics. Patients will have questions and caregivers will have questions about risk factors. We touch upon GVHD prophylaxis with different regimens. Sometimes patients are astute enough to ask, “Why am I not getting Cytoxan?” You have to be a little careful in the education class, but for the most part, we use that as an opportunity to reinforce what’s been described during the initial consent session with the physician.
Corey Cutler, MD, MPH, FRCPC: Yi-Bin, do you mention the potential effects on quality of life, particularly with chronic GVHD, at the time of a consent session or information session?
Yi-Bin Chen, MD: I do mention it, but I agree with Linda that it’s a lot of information to give all at once. Patients are often fixated on their inpatient hospital stay for obvious reasons: because of how dramatic it is, and they’re about to go to the hospital for several weeks, and there are logistics behind that. As Linda said, graft-vs-host disease happens after that. How do you talk about events that happen after this big thing that patients are focused on? Not everybody gets graft-vs-host disease. It’s hypothetical; there’s no average experience.
I talk about graft-vs-host disease and quality of life much more in the chronic graft-vs-host disease sense because in acute graft-vs-host disease, if you have lower GI disease, you’re back in the hospital for several weeks. That effect on quality of life is obvious. With the skin disease, patients are recovering from transplants during this time, so it’s tough to separate things. You’re right: large studies have shown that chronic graft-vs-host disease is the single most important factor to determine long-term quality of life in our growing number of survivors after transplants, so it’s a huge priority. We talk about how the symptoms might affect their quality of life. We talk about the treatments that exist for chronic graft-vs-host disease, the standards we have, and how we’re trying to improve on might affect quality of life. It’s difficult to get into degrees and how much.
As you know, Corey, our instruments to measure these things aren’t perfect. It’s hard for patients to understand what those instruments mean in terms of patient-reported outcome, instruments, and what we’ve studied. Overall, I do talk about it. It’s difficult for patients to truly understand it. The key is to continue to talk about it. Education overall. These things happen at multiple time points and probably has to come from multiple sources on the care team. That’s the important thing to get patients ready for what may come and to try and manage expectations.
Transcript edited for clarity.