Corey S. Cutler, MD, MPH, FRCPC: Dr DeFilipp, how important is it that we see these patients who might be transplant candidates early on in their disease? When should a patient be referred in?
Zachariah DeFilipp, MD: There are a number of important factors that play into the timing of a transplant referral. But in general, having patients meet with the transplant team early in their disease course is typically beneficial for the patients, family members, and transplant team. For the patients and their family members, the initial transplant consultation is an educational session where they can learn about what’s involved with the transplant. They can learn why they might be considered a transplant candidate and what steps need to happen to determine if transplant is going to be the right course of action. For the transplant team it allows us to review the patient’s disease in more detail and to begin the process of identifying a potential donor. When thinking about how long it typically takes from the time of the initial transplant to the actual transplant, it depends on a few main factors. The first is how urgent the transplant is from the perspective of disease treatment. For patients with acute leukemia, we’re on a shorter timeline, whereas patients with myelodysplastic syndrome or chronic leukemias may have longer courses of treatment prior to the transplant. It’s important to know what the disease status is. Is the disease in remission or at least in response and amenable to transplant at this time, or is more treatment needed before moving forward with the transplant? Finally, who is going to be the donor and what is their availability? A transplant can be arranged in as little as 4 to 6 weeks, but it often plays out over a longer period of time.
Corey S. Cutler, MD, MPH, FRCPC: You mentioned the element of a transplant team and the team you have working with you. Who are the members of that team? For people to understand how big a process this is.
Zachariah DeFilipp, MD: When patients come for their transplant consultation, in addition to meeting with the transplant physician, they also often meet with 1 of the transplant nurses where they’re provided educational information. They will meet with our transplant coordinators or at least our donor coordinators to help arrange HLA [human leukocyte antigens] typing of appropriate family members in search for a donor, and early on we have our patients meet with our social workers so that they can provide the extra support that transplant patients need in preparing and thinking about a transplant.
Corey S. Cutler, MD, MPH, FRCPC: Dr Antin, can you comment on the role of the nurse navigator, a very specialized position we have here at our institute and what that person generally is responsible for?
Joseph H. Antin, MD: Let me expand on 1 thing that Dr DeFilipp said earlier. Even for patients who don’t need a transplant right away, it’s helpful to have them in the system early because things happen. If you have someone who appears to have good or standard risk at AML [acute myeloid leukemia] and things are going well, there can be early relapses or changes in clinical status that may warrant transplantation sooner rather than later. It’s always useful to have everything set up and ready to go, even if you’re not using it, so if you need to move to transplant quickly, you can do it without a delay. In our program the oncology nurse navigator is the person who does virtually all the coordination of the transplant. When I see a patient and discover the underlying physiology of the disease, I discuss what transplantation is all about. I share with them why we’re doing it, how it’s accomplished, and what the adverse effects are. We talk about donor availability and the types of donors and conditioning regimens, and at that point the nurse navigator comes in and starts the process.
The patient has to acquire the names of the donors and their telephone numbers, so we can contact them and get them typed. We look into housing, housecleaning, family support at home, and who lives in the household. Do you have a spouse who is supportive? Is it a household where there is only children and no other adults? Do you live alone? All these things require special arrangements. Transplantation is a complicated, potentially dangerous procedure. It’s best to have control over the medical and social situation. The nurse navigator does the original assessment. They provide additional opportunities to social and medical history. The initial transplant consultation can be somewhat daunting for a patient. It’s complicated. Sometimes it takes awhile for things to settle in and for people to get questioned. So once I’m finished with the patient, the nurse navigator joins and may be the one who is capable of filling in the gaps and answering additional questions. Additionally, she’s the one who will coordinate with the donor center, as well as a National Marrow Donor Program, and the financial coordinators to complete insurance. She plays a critical role in tying the whole thing together.
Yi-Bin Chen, MD: May I emphasize what both Joe and Zach said? We all fully agree. Seeing potential transplant recipients as early as possible makes for a successful transplant in terms of all the planning. It’s important to emphasize that you never know what a potential recipient’s donors will be. Oftentimes, if they have several siblings and you believe they’ll have a fairly straightforward search through the National Marrow Donor Program, it’s not that way until you actually do the search. It can take many months to figure out who the best donor is. If the patient is not going to get transplanted for many months or even a couple of years after you first meet them, that’s OK. It doesn’t hurt to meet us at the beginning to start the journey.
Corey S. Cutler, MD, MPH, FRCPC: Yes, and there are guidelines published by the National Marrow Donor Program, or Be the Match, that really speak to when is the right time for a patient to be referred in for transplantation. The NCCN [National Comprehensive Cancer Network] has come forth with guidelines in this regard. Those are easily available on the web.
For community-based oncologists, simply having that and understanding who a potential transplant candidate might be—either now or in the future—is useful in terms of making sure the referrals are done in a timely manner. So when transplantation is urgently required, we at least have some of the pieces in place to get the patient into the transplant unit quickly.
Transcript Edited for Clarity