Alix Beaupierre, RN, BSN, OCN
At the recent 2017 BMT Tandem Meetings, Oncology Nursing News sat down with Alix Beaupierre, RN, BSN, OCN, who helped to create and successfully implement a patient education and AE management program for this population across 22 sites, specifically in participants with refractory diffuse large B cell lymphoma (DLBCL). In that role, Beaupierre, transplant nurse coordinator at the Moffitt Cancer Center in Tampa, Florida, along with a multidisciplinary committee that included other nurse specialists, collaborated to determine what information and support these trial participants needed and how best to provide it.
Oncology Nursing News: How did this patient education for the ZUMA-1 trial come about?
Beaupierre: Moffitt has been one of the primary centers in working with Kite Pharma for the CAR T trials. In the very beginning stages, nursing was not involved in the process. Because there was some distress identified in the patients and the caregivers, as well as the faculty that were putting the program together, we identified a need for patient education, and nursing got involved. I volunteered, because who doesn’t want to be at the forefront of the most up and coming practice in medicine for transplant?
We formed a committee that involved a nurse practitioner, clinical specialists, our CNS nurse educator, and then a few of the coordinators as well. We sat down and said, "What do we need for these patients?"
We had to learn about the CAR T-cell process ourselves and about the major side effects of therapy for the patients. Our major focus was teaching the patients what they were going to go through, across the care continuum.
Our clinical trial specialists are not allowed to do patient education, unless they're an RN. We only have one that's an RN. A lot of the patients were not receiving the education related to the potential side effects of the therapy. They were receiving the consent; did it include the side effects of therapy? Yes, it did. Did they understand it? No, they didn't. Nursing is often the specialty which can explain and break it down for them.
What was the solution that you came up with?
We created an educational folder, we made it bright red, something consistent. We asked patients to take it to all of their appointments, so that anybody that they met with could add information to it.
The way that the therapy works, because the cells are collected and sent off to be genetically modified, there's a timespan in between there that's not concrete. So we incorporated a calendar, something more tangible to help the patient understand the flow of what to expect. They understood enough to see that these weren't concrete dates, but when they’re called by their trial coordinator to say that their cells are going to arrive on this date, now they knew how the rest of the process was going to unfold. That was really helpful for them.
For the early patients, we hadn't required a caregiver. But when we looked at the big picture, we said that this is no different from any other transplant that we do, or even any other chemotherapy. We require them to have a caregiver. We also added quite a bit into the folder, as far as the central nervous system toxicities, the neurotoxicities, tumor lysis syndrome, the side effects of chemotherapy in general, at-home chemotherapy precautions, and, for the post–follow-up, neutropenic precautions.
What has the response been to the program?
It’s been extremely helpful. Two of the other major participants were our clinical nurse specialist and our patient education. They spent more of their time during the inpatient phase of treatment. They saw them then, and I saw the patients on the outpatient side. Once the patients recover from the side effects and they start to recover their white count, they're discharged to the outpatient environment, which is where I work.
We get a full circle view, but I made a point to make inpatient visits. Most of the time, I wanted to see the patient when they were sick. To be able to say "I'm just checking on you" and then be able afterward, to go back and see if they even remember me checking on them, and do they remember having the side effects, as well as to see their loved ones, at the bedside, be supportive and be available to provide encouragement or more education if they felt it was needed.
Most often the patients did not remember having even the worst of the side effects that they experienced, but the family did. It was good to receive the feedback from the family, asking them, "Was the education we provided good preparation for dealing with watching your loved one experience these side effects?" And they all said “yes.” That's what's so validating and heartwarming about the whole situation.
What did the patients at that time have to say about the experience?
So many of them were very hopeful; they were all in very good performance status coming out. Most did not remember the side effects of therapy; some of them remembered that they had a fever the first day. But if their fever led them to having a neurologic episode that lasted for several days, they didn't remember it. But the family did recall it, and then it was the family telling them about themselves and they said: "We're so happy that we knew what to expect," because it really can be scary, to observe and not know that this is expected.
When you teach patients that there are side effects that may seem very scary, but that they're expected, patients and their loved ones handle it better, and they serve the team better because they know their loved ones so well, with the neurotoxicities, the slightest change in personality or awareness, they're the ones who can report back to the healthcare team. We started encouraging them to be there at least for the first 4 days, whereas before we never even required that patients had to have a caregiver. Making all of these changes has definitely improved the patients’ outcomes.
How important is it for the nurse to be present on a clinical trial—to be the link between the patient and the physician?
I absolutely think that every clinical trial should have a collaborative meeting before even kickoff to make sure that all of the multidisciplinary roles are represented and have input on how the trial is going to affect the patients and our relationships with the patients. We all want to be informed.
Nurses are the ones who do most of the education for the patients, so if you are on a trial where only the clinical trial coordinator ever spoke to you about [AEs], and nursing is not aware of it, it looks like we're not all on the same page, that we're not cohesive and a team. Nurses definitely don't want to feel that way, and we don't want our patients to lose trust in us or any part of the team. I think it's very important that there's collaboration, so that we can teach patients the side effects.
That's the first thing that we always ask: “What are the side effects?” We don't have time to read the 232 page trial, give us the nuts and bolts of, “How is this going to affect that patient, so I can teach the patient what to expect.” And that's where our focus is.
What would you say to facilities looking to create a similar patient education program?
It's really important that any institution that plans on creating a program like this is to involve nursing from day 1. That's my take-home message to everybody – it's to get involved with the patients, teach them about the CAR T side effects, the neurotoxicities, and understand that your patients are going to be scared. Some are going to look at you and say, "I didn't realize."
Nursing is crucial because patients have medications that they have to stop because they have to have procedures that are invasive. The clinical trial coordinator does not have the knowledge to teach them that and to teach them the side effects or potential risks of not stopping those medications. Nursing is absolutely vital to this process, so any institution that plans to initiate such a program should definitely have nursing on board from day 1.
What are some of the most important things for a BMT nurse to keep in mind?
Everybody's trial, everybody's journey, is different. Their backgrounds are different. The patients do rely a lot on nursing for knowledge. When we do consults with the patient initially, there's a joke amongst the nurses that we go in after the physician goes in and rattles off the statistics of survival rates and so on and so forth, the nurse comes in and says, "Okay, so now I'm going to speak English." And the patients laugh, and they appreciate that because we're just going to break it down: This is what you're going to go through. I'm going to be your primary contact.
Nurses are trained to be constantly assessing. We're assessing whether the patients have absorbed the information, if they seem overwhelmed, if they are in denial, if they are in noncompliance. Very often we have subtle ways of finding out the type of behavior that could be detrimental to their course of therapy, address it, and still establish great relationships. Patients rely on us and tell us the truth, though sometimes we have to dig for it. Nurses build lasting relationships that affect our professional and your personal lives, drawing strength and inspiration from how our patients get through their illnesses.