Welcome to The VJ Sessions brought to you by the Video Journal of Hematological Oncology (VJHemOnc). This exclusive discussion features leading experts Erik Aerts, John Murray, Michelle Kenyon & Rose Ellard who discuss highlights from the 3rd European EBMT-EHA CAR T-cell Meeting Nurses Program.
The topics of discussion include highlights from the meeting, how to establish and support multidisciplinary teams, palliative care, and future directions of the CAR-T space.
Highlights from the 3rd European EBMT-EHA CAR T-cell Meeting
“The talk at EBMT-EHA CAR-T from Rose Ting really gave you a flavor, I think, of how quickly things change. And, that landscape that we’re dealing in, is a patient who comes and along with a hope and expectations that this treatment is going to be completely curative. But, sometimes, that doesn’t happen.”
– John Murray
Establishing a multidisciplinary CAR-T communication board
“I think as nurses one of our primary roles is patient advocates and, I think, no more so, is this important than in the role that we have in CAR-T therapy. There’s a real delicate time period whereby, bravely, we march on with this treatment in patients who appear to be failing everything else. And, I think it’s quite difficult to do that unless there is somebody there who’s advocating on behalf of the patient.”
– Michelle Kenyon
Immune cell therapies in solid tumors, treatment setting and supporting multidisciplinary teams
“I have a small amount of recent experience with solid tumor patients and there are obvious parallels in that the patients have had a number of lines of prior therapy before they get to the point of the trial; there’s a lot of coordination involved between the various departments. And, having been a research nurse myself for many years I realize that involving a trial into things adds an extra layer of complexity in an already very complex treatment pathway.”
– Rose Ellard
“You have panel of supporters for transplant, JACIE-accredited centers. I think one of the reasons for that is because of the toxicities associated with the administration of these living drugs. Until the toxicity profile is much more predictable for many, many more patients, then this is going to be something that is very much an inpatient treatment”
– Michelle Kenyon
Palliative care & future of CAR-T
“There’s an awful lot of time between that “Hello, we are about to start on this treatment plan,” to the point of delivering it. And, I think if you can’t be honest somebody at that point when you’re first meeting to them and saying to them, “We might not get to the end of this, because you are very unwell today, when we’re first starting to assess you.” I think we need to have a long hard look at ourselves and we need to be able to be honest with our patient and say “We’re planning this, but we might not actually get to the point where we can give you these cells back. You might not make it to that point, and even if you do, you might be so unwell throughout this procedure that, again, you might not survive.”
– John Murray
“It can be really helpful to have patient stories, to have patients who have gone through this experience that are able to talk to other patients or share those experiences. Those can often be really helpful vehicles for novice patients to be introduced to this therapy.”
– Michelle Kenyon
Erik Aerts: Hey, colleagues, it is my great pleasure to introduce you to this Video Journal of Hematological and Oncology. We will discuss today, a roundtable discussion with several colleagues, about the post EBMT-EHA CAR T-cell meeting we had last week. So, maybe, Rose, you can introduce yourself, firstly.
Rose Ellard: Hi, everyone, my name’s Rose Ellard. I work at the Royal Marsden Hospital in London, UK. And, at the Marsden, I am a Cellular Therapy Clinical Nurse Specialist and Lecturer Practitioner. I also have a role with EBMT; I’m the nurse member of the Cellular Therapy and Immunobiology Working Party.
Erik Aerts: And, Michelle, maybe you can also introduce yourself?
Michelle Kenyon: Hi everyone, my name is Michelle Kenyon. I work as Consultant Nurse in Transplant at King’s College Hospital in London, UK. And, I also have a role with EBMT as President-Elect for the EBMT Nurse’s Group.
Erik Aerts: And, we have John.
John Murray: Hello, welcome everybody. My name is John Murray. I’m a Nurse Clinician working at the Christie Hospital in Manchester in the UK. My role is predominantly around outpatient care of post-allograft patients. And, my role within EBMT is the current President of the EBMT Nurse’s Group. And, I’m very pleased to be handing this role and responsibility over to Michelle in a month’s time.
Erik Aerts: So, my name is Erik Aerts. I’m a Nurse Manager working in the stem cell transplantation hematology and CAR T-cell setting at the University Hospital in Zurich in Switzerland. And, I’m the President of the Hematology Nurses & Healthcare Professionals Group.
Erik Aerts: Well, today we will discuss the excellent meeting we had about the CAR T-cell therapies. So, Rose, what do you think? What was one of the highlights for you? And, what do you think? Where are we now and where are we going to with CAR-T cell therapies in the future?
Rose Ellard: One of my highlights was listening to Ruth Ting talking about the role of palliative care in patients receiving CAR-T therapy. I’ve heard Ruth speak before; she’s an excellent speaker, and I thought highlighting the role of palliative care is a really important part of the patient pathway, and I really enjoyed hearing her talk as part of the panel discussion she was involved in.
Rose Ellard: As far as where we are going, I think we certainly have new products coming down the line in different disease areas. We’ve got a couple on the horizon in lymphoma, including mantle cell lymphoma is the new kid on the block. And, we’ll potentially start maybe treating myeloma patients in the not too distant future, as well.
Erik Aerts: Thank you. We’ll come back to this exciting topic as you mentioned before, palliative care. Michelle, what was one of your highlights in this meeting?
Michelle Kenyon: I mean, I am inclined to agree with Rose. I listened to Ruth’s talk, and again, I really enjoy hearing her speak. She’s great, and so that was certainly one of my highlights. And, I think really bringing out the importance of making sure that palliative care support is plugged in for these patients right from the get-go, really making that a normal part of their care, rather than something that happens when we start to become concerned that things are not going well. Palliative care support can be really important, not just in end-of-life care, but also with symptom control. And, actually of these patients come to us with quite a heavy symptom burden which is really helpful for our palliative specialists, to be helping us to support the patients with. So, for me, that was a real key session.
Michelle Kenyon: And, I really enjoyed the session that I chaired. I was very privileged, very lucky, to be chairing the final session of the day where we had Ruth Clout talking about their basic education program that she’s organized in her trust. I think, really, there’s a model there that many other organizations could learn from. She’s clearly been very successful in delivering the education components and putting those together. And, that training has been very well evaluated. So, that was a highlight for me, and that also for me, then dove-tailed really nicely with Rose’s talk. She presented her case study, and it was a case study, that unfortunately didn’t have a favorable outcome. But, from which there was a lot of learning to be gained about the benefits of managing these complex cases with lots of the specialties involved. And, one of those was, indeed, palliative care. And, that then was followed by Nicole’s session on survivorship and the considerations of survivorship after CAR-T.
Michelle Kenyon: And, so I think, for me, actually, I wouldn’t naturally have thought that those sessions would have fit so nicely together, but they really did. The training, followed by the case study that pulled together a lot of the education components and the learnings and then really nice, afterwards, survivorship.
Erik Aerts: John, what were your highlights?
John Murray: So, I think maybe in a slightly similar vein to some of our previous two with Michelle and Rose, I enjoyed the session that I chaired. I think it is quite fortunate that maybe we all quite liked chairing the session that we were part of. I think I was quite lucky in that one of the speakers in my session was one of my consultants, which probably helped somewhat. As people know, I quite like some of the more techy stuff. And, talking about blood tests and parameters and numbers. I quite like those. So, getting to the nitty gritty of some of the tests that are done for people either pre, during, or post the infusion of their CAR cells. And, it’s understanding why we are doing these tests. I personally like to understand; I know I’m taking this sample, why am I taking this sample? I like to have an understanding of that, so I can explain that to my patient, so they appreciate why they’re having so many blood tests taken. Where all of these bloods are going, what we’re looking for and the results of these blood tests once we’ve taken these samples from them.
John Murray: So, I find that quite interesting talk to listen to, to see that kind of nitty gritty, the day-to-day things that we’re doing with and for our patients. And, I suppose that one that dove-tails then with that, was the clinical presentation that Rose gave. Which, I think was wonderful in its delivery. It was somewhat unfortunate to say the least for the patient that she was describing. That seemed to be an incredibly hard thing to listen to. It was a complicated patient who had a lot of issues and a somewhat very difficult time throughout their treatments. And, I think that was very well-presented.
John Murray: It really gave you a flavor, I think, of how quickly things change. And, that landscape that we’re dealing in, is a patient who comes and along with a hope and expectations that this treatment is going to be completely curative. But, sometimes, that doesn’t happen. And, we get into a situation of palliation followed by, unfortunately, death.
John Murray: And, I think that this was a really good presentation that kind of brought that home, that yes, we go for broke with patients, but sometimes it doesn’t work. And, having all those things in place… And, I think it was just really very well-described, I think. And, I don’t think there’s anybody who’s dealt with CAR-T patients who hasn’t had a similar situation to that. And, we can all relate to how difficult and complicated these patients are to look after, but at the same time, equally rewarding, very much as a transplant patients are in a similar vein. So, there are my two that really stood out for me, really Erik.
Erik Aerts: The first session we talked about establishing a multi-professional CAR T-cell communications board. So, what do you think? Who should be involved into this multi-disciplinary CAR-T cell board? And, what should be the role from nurses?
Rose Ellard: Well, being a nurse, I’m going to start with nurses. And that maybe nurses, not just from the CAR-T setting, but maybe nurses who are based in the lymphoma service or with the leukemia service, or whatever other indications we have for CAR-T in the future. Depending on where the patients have their primary treatments, it could be in the CAR-T center, it could be elsewhere. And, those nurses will be the nurses who may have known the patient for many months or many years, and will be in a very good position to advocate for those patients. Of course the nurses involved in the delivery and coordination of CAR-T, are important to be involved in that setting, and potentially as we discuss representation from palliative care. And, if perhaps representation from our intensive care team, because patients may well need support from our colleagues in intensive care during their treatment.
Rose Ellard: Of course, I can’t pretend it’s all about nurses. Our medics have a place at the table, too. And that would be colleagues in hematology, and again, potentially palliative care, intensive care, cardiology, neurology, and I’m sure there’s many others that I’ve forgotten that Michelle and John will jump in with now.
Erik Aerts: Michelle, what do you think? What could be the role of nurses in this communications board?
Michelle Kenyon: I mean, I think as nurses one of our primary roles is patient advocates and, I think, no more so, is this important than in the role that we have in CAR-T therapy. There’s a real delicate time period whereby, bravely, we march on with this treatment in patients who appear, to all intents and purposes, to be perhaps failing everything else. And, I think it’s quite difficult to do that unless there is somebody there who’s advocating on behalf of the patient. But, advocating on behalf of the patient who is fully informed of the choices that are available for them. And, is equipped with the knowledge to be able to make an informed decision about their treatment going forward. So, yeah, I think first and foremost, the role of the nurse is an advocate. Erik, I’d be really interested… you chaired that session, I’d be really interested to hear your thoughts and what was going through your mind during the talk.
Erik Aerts: So, I liked the talk. And, I think in the whole process, nurses should be a role, because, well, we don’t have a clear role in the decision-making process, but very often, patients and their relatives are asking us questions after they talked with physicians. So, I think we do have a very clear role together with doctors regarding the decision-making processes. But, also regarding the whole coordination because we are 24-hours together with the patients involved.
Erik Aerts: John, what do you think? What could be the role of nurses? And, who else should be involved in this communication board? Maybe you have a daily experience to those boards.
John Murray: Yeah, so I think there are several different aspects I suspect to look at this. I think that Michelle’s points are very valid that nurses predominantly, we are the patient advocate. And, I think that’s without doubt, what we should be there for. And, similarly, to your point, Erik, as information givers, and suppliers, and explainers, because I think there’s an awful lot of jargon is banded about. Even the word CAR-T, what does that mean to a patient when they first hear that. And you have to explain what that means.
John Murray: So, I think that we’re very much linchpin within any organization, no matter how simple or how complicated that organization is. The nurse is often at the center of everything. And, it’s that person that is able to liaise on behalf of the patient and with the patient as well, advocating in both directions for them, and explaining things to the medics that maybe the patient hasn’t got across. And, the other way, explaining to the patients something that the medic hasn’t got across to the patient. So, I think it is very much a two-way process and we’re the conduit for that and very much being that central person, that central role and something that everything feeds through.
John Murray: And, if you are in that position, I would hope that you’re probably quite a senior nurse to enable you to do that. And have a lot of experience and breadth of knowledge that you can bring to the table. So, when there are team meetings with the neurologist, with the intensive care consultants, with the rest of your team, that your voice is heard because you are seen as an important and a vital member of that team who brings with them knowledge, experience, and the patient’s thoughts and wishes along to that discussion. So, again, I can’t say enough really that very much the nursing role is right at the center of that and everything feeds out and through and off that in both directions. So, that would be my stance on that really.
Erik Aerts: And, then Jessica Ritchie gave us a very nice overview of immune cell therapies in solid tumors. Does somebody already have experience with that kind of therapies in solid tumors?
John Murray: It’s not something I’ve gotten an awful lot of experience in at all. I don’t know if either Michelle, Rose or yourself even, Erik, have you?
Erik Aerts: No. Only, I heard about it and only I heard about it from trials they are doing in the lab with mice, but I haven’t heard about it that they have done it with patients. But, I think in some solid tumors, it could have the future for some kinds of patients.
John Murray: Yup. I think there is possibly more research trials in London, certainly at Michelle’s center I would have thought with Rubin down there.
Michelle Kenyon: I mean, we’re a liquid tumor site, so it’s all malignant hematology, and I’m liquid hematologist as a nurse, so I don’t have experience of CAR or immune effector cell in solid tumors. But, I heard Jessica’s talk and it was absolutely great overview of really opening up the possibilities of what this treatment can potentially offer to people who have currently incurable solid tumor cancers.
Michelle Kenyon: There are trials that are at, certainly at different phases of development, and she was able to give a great explanation as to where those are at and what’s really next on the horizon in terms of the solid tumor work. So, certainly a great session to tune into and look at.
Rose Ellard: Yeah, I really enjoyed it as well. I have a small amount of recent experience with solid tumor patients because we have a trial of tumor infiltrating lymphocytes open at the Marsden, and I have had some involvement with those patients. And, there are obvious parallels in that the patients have had a number of lines of prior therapy before they get to the point of the trial; there’s a lot of coordination involved between the various departments. And, having been a research nurse myself for many years I realize that involving a trial into things adds an extra layer of complexity in an already very complex treatment pathway. So, it will be interesting to see what develops in that setting. So, that, further back down the track than where we are with hematology.
Erik Aerts: Yeah, I think the whole development of those kinds of cell therapies are very important for the future for treating our patients. And, while one step further is well, what do you think? Where should we treat those patients? What are your experiences, and I’m thinking about oncology settings, hematological settings, but also about in- or outpatient settings. What is your experience and what do you think for the future does that mean?
John Murray: Definitely could be a hot potato. I think that where we’re at at the moment, if we’re treating and thinking about our liquid hematology patients, and if we include within that, the lymphomas and call them liquid even though they’re potentially not. Personally, I think that it should be done within a JACIE-accredited transplantation site. I know there are other areas that and other centers that will give them on ordinary wards that may have hematology patients and may have other kind of solid tumor kind of patients. But, for me, the complexity of CAR-T therapy is akin to allogeneic stem cell transplants and the experience of a nurse who is fully-trained as a transplantation nurse carries those same skills across into CAR-T therapy.
John Murray: And, if I was a patient, I would want to be somewhere where the staff had seen and are able to deal with the complexities that I may show them and the side effects, the complications, the problems… I would want to be somewhere where I had confidence in the nurse and the team around that nurse that they knew what they were doing because they’d seen this before.
John Murray: I’m sure that over time that as it goes into other disease groups that there won’t be physical space to do this, so, nursing staff, medical staff and all of the ancillary members of the team are going to have to step up in other areas. But, certainly, that’s not going to happen in the next 12 months, 24 months, I would think. I think before it becomes a common place treatment and whilst it’s still less common as it is at the moment, then, in my opinion, keeping it on a hematology transplant, JACIE-accredited, EBMT nurses, is the place where I would want to be and where I want my patient to be.
Erik Aerts: What do you think, Rose?
Rose Ellard: That’s certainly what we’re doing, yeah, we treat our solid tumor cellular therapy patients in the same ward that we treat our CAR-T patients. The nurses there are skilled and knowledgeable in looking after cellular therapy patients and that for us is where we feel is the most effective setting for these patients to be cared for.
Rose Ellard: But, as John alluded to, we know we don’t have unlimited beds in hospitals, in hematology units, with nurses who are skilled in looking after cellular therapy patients, so that will certainly be a question that we have to consider in the future.
Rose Ellard: Hopefully, we might be able to move towards an outpatient, ambulatory type setting for some patients, but that of course won’t be suitable for all. So, I think that will be an interesting development to see how that goes over the next few years.
Erik Aerts: Michelle, your opinion about the treatment setting?
Michelle Kenyon: Yeah, I’m afraid you have panel of supporters for transplant, JACIE-accredited centers. I think one of the reasons for that, there are many reasons, but one of them of course is because of the toxicities associated with the administration of these living drugs as they are, but they behave very much like cells. And, I think until the toxicity profile is much more predictable for many, many more patients, then this is going to be something that is very much an inpatient treatment, certainly parts of it for the majority rather than the few.
Erik Aerts: Yeah. I also agree with all three of you. I think it’s very clear. CAR-T cell therapy should be done in JACIE-accredited center. And, I would like to say to prefer in an allogeneic setting because there are so many similarities with an allogeneic transplant. Another question is, what do you think? As we know CAR T-cell therapy is a complex, intensive therapy for patients. How do you support your team? Your multi-disciplinary teams when taking care of CAR T-cell patients, John?
John Murray: The team memb- as in the nursing staff and the other team? Yeah? So, as… was it Michelle I think, at that top of the shop, when she saying which talk she liked, I’m very fortunate to work with Ruth Clout as our Practice Educator. And, she’s pulled together a absolutely fantastic training program. And, she runs this a couple of times a year. And, this is aimed across the board. So, we have a variety of allied health professionals attending the training days that Ruth runs, which is excellent. She spends an awful lot of time, when allowed, working one-to-one with patients on the ward, with junior members of staff. It’s becoming more and more difficult to do that in this current COVID situation, with staff shortages trying to double-up is quite difficult.
John Murray: What you’re trying to do is educate as many of your junior members of staff and get them to be useful and fulfilled members of the team. That they’re able to pick up the pace pretty quickly. When they land on the ward, everything is shiny and new, Ruth grabs hold of them and whips them into shape. She’s got an absolutely fantastic way of teaching, training, educating people. So, I think I’m somewhat blessed in that fact that she’s there and has got a fantastic way of bringing everybody up to speed.
Erik Aerts: And, it’s really great development. And, Michelle, what do you think? How do you support in your daily life CAR T-cell patients? Or, does your team get any psychological support?
Michelle Kenyon: Yeah, so I don’t directly. I’m not there with the CAR-T patients. But, I work with a team of clinical nurse specialists. And, I think that, as CAR-T developments have gone forward we’re seeing more and more CAR-T CNS roles being developed. And, I think that this is fantastic and a great opportunity. But, I think one of the things we really need to watch out for is that these are often single-handed roles. And, so, you might have a team of clinical nurse specialists that work with leukemia patients or you might have a team of clinical nurse specialists who work with transplant patients, but you might have just a single CAR-T CNS, and I think it’s really important that that role evolves within the context of a peer group, a team of CNSs that you’re able to grow and develop with, even though you might be in a single-hand role. So, that would be one thing for me.
Michelle Kenyon: As clinical nurse specialists, we’re extremely fortunate at the organization I work in, and I think many organizations have a similar offer, in that we offered regular supervision. And, it’s time-tabled supervision within the context of our job plans, which happens on monthly basis, that we can use as peer support opportunity, a debrief opportunity and those are facilitated, supervision sessions, supervised by a member of our psychotherapy psychology team. And, the team of psychology psychotherapists are mental health professionals who also work with our patients. So, they know exactly, the difficulties and the challenges that we experience at the bedside, with the patients.
Michelle Kenyon: We also have opportunities through those same psychotherapy individuals to approach them for one-to-one conversations, and that can also be helpful in addition. They obviously also provide us with support for our patients, which is an indirect way that we get support ourselves. So, we can have support with challenging individuals, we can access support through them for our patients who are experiencing distress and general mood difficulties. So, we’re very blessed actually and that support for the clinical nurse specialists, support for the patients, continues when a patient’s been discharged from the hospital as well.
Erik Aerts: Thank you, and Rose, in your clinic, does the nursing staff get any support?
Rose Ellard: Yeah, I mean we also, much similar to what John and Michelle have described in terms of education and clinical supervision. Another thing I think is really important to make people feel supported is effective communication. That’s, of course, challenging at the moment, when we don’t always see people face to face. We don’t see, even our patients, face to face, and certainly not their relatives as much as we normally would.
Rose Ellard: But, I think it’s effective communication that goes to the right people at the right time, but also communication styles. And, being approachable, and making people feel supported in their roles, that way that they know who to go to if they’re in difficulty. And, so I think that’s very important, too.
Erik Aerts: At 3rd European CAR T-cell Meeting we had also a discussion where a patient advocate was involved. We talked about the ethics surrounding CAR T-cell therapies. Yeah, what do you think about palliative care? Do we need to involve them? Because there is so much hope for patients and then to involve palliative care specialists, why should we? What do you think, John?
John Murray: I’ll take the bullet first. Yeah, without doubt. I think, again, if we all go back to our own clinical practice and think of patients who’ve come through your department. And, the patients that come through for this therapy are often at a point of referral into this pathway, incredibly sick. They’ve been through an awful of therapy to get just to this point. And, then once you start on this pathway, they’re not going to suddenly get better in the next week. They’re going to remain unwell for several more weeks while you’re doing their work-up, investigations, you’re harvesting them, you’re waiting for the product to be made, you’re waiting for it to come back. You’re then infusing into them and their chemotherapy and then waiting for the cells to go in and then waiting for them come and grow.
John Murray: So, there’s an awful lot of time between that “Hello, we are about to start on this treatment plan,” to the point of delivering it. And, I think if you can’t be honest somebody at that point when you’re first meeting to them and saying to them, “We might not get to the end of this, because you are very unwell today, when we’re first starting to assess you.” I think we need to have a long hard look at ourselves and we need to be able to be honest with our patient, and say “We’re planning this, but we might not actually get to the point where we can give you these cells back. You might not make it to that point, and even if you do, you might be so unwell throughout this procedure that, again, you might not survive.”
John Murray: And, I think Rose’s case that she highlighted really showed that in really focus way that it was presented that things don’t go A, B, C. And, people come in, they have their treatment, they go home. It’s just not that easy.
John Murray: So, I think that, as a team you’ve got to be really quite clear from the outset. And, I think it’s really quite important, and it comes back to the nurse being at the center of this and being the advocate and saying, “We need to have these conversations today, or if not today, maybe the second visit.” But, at least very early in that process and say, “This is what we’re going to do, however, these are the things that might happen. These are the things that might go wrong. You need to be thinking of putting your affairs in order, you need to be thinking about how this is going to affect you, your family, potential friends of yours.”
John Murray: It’s the whole game, it’s not just about saying, “Oh, are they for palliative care or not?” It’s… that conversation just leads into so many other things, and I think that is absolutely vital for us to take that on board and begin those conversations really early on. So, it doesn’t come as shock. You’re a week in, your toxicity is through the roof and somebody comes and goes, “I’m really sorry, but your husband, your wife, your daughter, your son, they’re not going to make it until tomorrow. We’re really sorry; there’s nothing more we can do.” And, that comes as a total shock to somebody. And, the poor old patient’s not done anything about saying goodbye to anybody, arranging… That is the worst possible scenario I can think of. That we have not adequately prepared our patient for all eventualities. We hope the eventuality is that they walk out and they’re cured and they never see us again. That’s what we all want, but that isn’t what always happens. I think that’s really important that we don’t focus on it, but we have that as part of the discussion.
Erik Aerts: Michelle, in your clinical day, is there already nowadays palliative care specialists involved?
Michelle Kenyon: Yeah, definitely. And why wouldn’t you if you have that resource at hand for any patient indeed. But, predominantly because of the high symptom burden initially that these people will often arrive at our hospital with, and so we have… We’re blessed with a fantastic palliative care team. And, we are able to involve them with symptom management and not just at end-of-life, so symptom management during an acute treatment setting. And, so, our palliative care team will often be involved with our patients before we are having end-of-life conversations with them. And, that really enables us to be as appropriate, I want to say, always appropriate but of course, maybe there are situations where we can do better and we can strive to do better.
Michelle Kenyon: But it enables us to always be mindful of having the right conversations at the right time for the patient and the for the caregivers as well. Because, our patients arrive with us, and of course our patient is right at the center of our focus, but at the center of their focus is their family and their network. So, we need to be able to support them through this as well.
Erik Aerts: Well, I think this is an excellent example and I can imagine that there are differences within Europe because in our setting, it’s very clear at this moment in time, palliative care specialists are not involved. Well, maybe they will be involved when end-of-life is an issue, but not from the beginning on. I think that’s a good topic to start those discussions with our specialists.
Erik Aerts: And, as I mentioned before, one of our discussion rounds, Lorna Warwick from the Lymphoma Coalition was involved, and we talked a little bit about well how are patients supported. Rose, in your setting, how are patients supported? How do you educate the patients?
Rose Ellard: I think as everything we do it needs to be a patient-centered approach. I’ve met a wide range of patients in terms of their understanding of CAR-T therapy. And, the patient I described in the case study was extremely well-informed and as an example, I remember him having his previous treatment in the day unit, and I said to one of the nurses, “What was that treatment targeting?” A voice from the other side of the room came “CD20!” So, he was incredibly well-informed at the point he came to us.
Rose Ellard: Other patients have never heard of CAR-T therapy and we’re starting right from the beginning and starting those building blocks of their knowledge about the treatment intent and we discuss that at some length and also the possibility of toxicities and also the time after their initial admission and in the weeks that follow. Have they got a carer at home? Are they within an hour of the hospital? There’s lots of things to consider. It’s very much a piecemeal approach. Bearing in mind, these patients will have just been informed that their previous line of therapy hasn’t been effective and they may have thought they may have been in some form of remission for some time, they may well be going through a period of shock, learning that they do need more treatment.
Rose Ellard: So, I would say that we support our patients on a very individualized and personalized approach, depending on their circumstances and their understanding.
Erik Aerts: Michelle, in your center, are nurses involved in the information process?
Michelle Kenyon: Yes, absolutely. So, at the clinical nurse specialist level, our patients will meet their key worker, actually, they’ll meet their key worker before they even arrive at our center because there has often been some cross-talk between their clinical nurse specialist at the referring center and the clinical nurse specialist at our center, the treating center, at the time the patient is referred. So, they will often have had a conversation about the patient before the patient has the first clinic appointment with us.
Michelle Kenyon: And, so being able to say that I’ve spoken to such and such, and or for their referring clinical nurse specialist to say they’ve spoken to the CNS at our center can be a really helpful and reassuring introduction, particularly if patients are having this treatment far from home.
Michelle Kenyon: So, there are nurses involved right from that very beginning of the patient’s journey with us. And, then of course we have our nurses on the ward who are supporting the patients at the bedside 24/7 during the time that they’re in the hospital and that clinical nurse specialist who meets the patient right at that first appointment, they are there throughout the patient journey. So, right from the beginning, right through to discharge and follow-up, so key part of the experience for our patients.
Michelle Kenyon: I really enjoyed Lorna’s session, and I think one of the things that she really highlighted and brought out was that it’s often important and can be really helpful to have patient stories, to have patients who have gone through this experience and have had a normal experience. So, with the pitfalls and with the toxicities that we talk about, and are able to talk to other patients or share those experiences, either through a buddy system or through some of the blogs or online sessions that are available. Those can often be really helpful vehicles for novice patients to be introduced to this therapy.
Erik Aerts: John, as far as you know, do your CAR T-cell patients get any support from patient advocates or patient support groups?
John Murray: Not at my center that I’m aware of. And, it certainly is a good idea. And, I’m sure that as time goes on, this is still a relatively new therapy, so I’m sure that there will be more groups that appear that are supportive of each other. But, maybe there’ll be ones that I’m unaware of and that the patients have setup, but, there’s nothing that we support here at the trust. So, no, I’m… there’s nothing that we have.
Erik Aerts: Well in our clinic we are working together with several patient support groups. And, also when patients will get a CAR T-cell therapy we try to link them with patients who had already had CAR T-cell therapy. And also with, for example, with the Lymphoma Coalition, one of the national supporting groups.
Erik Aerts: Well, one last question, to all the three of you. What do you think about CAR T-cell therapies and other immune cell therapies? Looking ahead in five years, where will we be? Rose, what do you think? The future of CAR T-cell therapies?
Rose Ellard: Oh, I mean, if you look back five years from now, when there were just trials being setup, look how far we’ve come in five year’s time. I think it’ll be fascinating to see how the landscape changes in the next five years. Of course, we’ll have more CAR-T products available for patients and a wider range of indications. We may well move towards an ambulatory or an outpatient way of treating some of our patients for certain indications once we’ve learned more about the toxicity profile and if we can be comfortable that those patients are safe to managed in that setting.
Rose Ellard: And, also from the view of healthcare professionals. Hopefully there will be room for career development for healthcare professionals from a range of backgrounds. I mean, John is a nurse clinician in transplant; Michelle is a nurse consultant, there’s lots of advanced nurse practitioners in lots of different settings, so there may well be room for those sorts of roles. But, hopefully, primarily, we’ll see improved outcomes for our patients as we learn more.
Erik Aerts: Michelle, how do you see the future?
Michelle Kenyon: Gosh, if I had a wishlist, and I’m not sure how realistic the wishlist would be, but I would want to see reduced toxicity, and I know I’m not alone in that. It would be great if we were in a position that these could be delivered safely in the outpatient and ambulatory setting. And, that patient selection was even better than it is at the moment, so that we can perhaps better predict who we can safely take through the treatment to have the best outcome possible.
Erik Aerts: And, John, in your clinic, how do you see the future of CAR T-cell therapies?
John Murray: Yeah, similar to everybody else, I think, it would be… I think one of the things, as well, would be where in the pathway this would come. Is there anyway of doing this earlier so that the patients are less sick by the time they’re having this treatment. And, if we are then doing more treatments would that then bring the cost down? Because, I think that at some point most health economies wouldn’t able to cope with the current price structure if we were to suddenly increase by 200%, 300%, 400%, 500% what we’re currently doing. So, I think there has to be a bit of give and take on both sides there, that if we’re treating people earlier, are we treating them with products that are less costly but are remaining cost-effective at the same time. So, that would be something that I would hope would move forward in the next five years.
Erik Aerts: Well, in our clinic we see already the huge change. And that’s why we already changed the name of our setting into STEM Cell Transplantation and Immune Cell Therapy in 2019. And, also looking at the number of patients we are treating, we are treating more and more patients with different hematological malignancies. And, in May we will start to treat patients with multiple myeloma with CAR T-cell therapies. And, also hearing the great keynote talk from Carl June and listening at his talk that he treated already in 2010 CLL patients. And, this means also hope for patients. So, I think there’s a very big and good future for CAR T-cell therapies, but of course the role of nurses, education, etc, is a thing we have think about.
Erik Aerts: But to summarize this discussion round, I think it’s very important to involved into the multi-disciplinary team, a lot stake holders if possible, to involve early enough palliative care specialist. The role of nurses is extremely important as you mentioned before John, we are in the center, we are in the middle of the whole treatment process. And, I think we all had the opinion that CAR T-cell therapy should be given in JACIE-accredited center and maybe preferable in an allogeneic center.
Erik Aerts: And, then education for patients and their families, but also to give them right and proper information is very important and finally to educate nurses I think the development of CAR T-cell therapy for the future is very big and there it’s very important to educate nurses and other healthcare professionals.
Erik Aerts: And, finally, because it’s still a high risk therapy, to support nursing and multi-disciplinary teams.
Erik Aerts: So, thank you very much. And, bye-bye.
John Murray: Thank you, very much.
Michelle Kenyon: Thank you, very much. Bye.
Erik Aerts – None
John Murray – Jazz Pharmaceuticals and Therakos
Michelle Kenyon –
Rose Ellard – Kite Gilead and BMS Celgene
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