In this episode of the podcast, we welcome Dr. Navneet Majhail, the Physician-in-Chief of Blood Cancers at the Sarah Cannon Transplant and Cellular Therapy Program and a widely respected leader in transplant. The focus of our discussion is the critical transitions of care that occur after patients undergo transplant and cellular therapy, a subject Dr. Majhail is deeply passionate about.
Dr. Majhail highlights the complexities of managing care transitions from specialized treatment centers back to patients' local communities. This process is crucial because it involves highly specialized care that is available only at transplant centers, making it a significant challenge for patients who do not reside in those cities. The journey doesn’t end at the treatment center; once patients return home, the role of the caregivers and community doctors becomes paramount in managing ongoing care and potential complications.
We delve into the multiple stakeholders involved in this process, including the primary care providers, hematologists, oncologists, behavioral health and physical therapy professionals, usually at the local level. The importance of a supportive care network, emphasizing that the caregivers take care of themselves is also highlighted
One of the key tools in ensuring smooth transitions is the survivorship care plan. Dr. Majhail describes it as a comprehensive document that includes information on the patient's cancer type, treatment details, potential complications, and follow-up care recommendations. It serves as a roadmap for both patients and their providers to manage long-term health outcomes effectively.
Throughout the discussion, Dr. Majhail stressed the individualized nature of post-transplant care, underscoring that there is no one-size-fits-all approach. Each patient’s needs can vary significantly based on their specific circumstances, making personalized care plans essential.
To conclude, the conversation reinforces the importance of transitional care in the journey of recovery and long-term health management for transplant and cellular therapy patients. This holistic approach not only addresses the medical needs but also the psychological and social aspects, ensuring that patients can return to their lives with the best possible support and care.
Resources:
International Recommendations for Screening and Preventative Practices for Long-Term Survivors of Transplantation and Cellular Therapy: A 2023 Update: https://www.sciencedirect.com/science/article/pii/S266663672301713X
Sarah Cannon Transplant and Cellular Therapy Program https://sarahcannon.com/service/blood-cancer
Tristar Centennial of Sarah Cannon Cancer Institute https://tristarcentennial.com/specialties/sarah-cannon-cancer-institute/
PCORI (Patient-Centered Outcomes Research Institute) https://www.pcori.org/
CIBMTR (Center for International Blood & Marrow Transplant Research) https://www.cibmtr.org/
FACT (Foundation for the Accreditation of Cellular Therapy) http://www.factwebsite.org/
Transplantation and Cellular Therapy Journal https://www.bbmt.org/
BMT Infonet https://www.bmtinfonet.org/
NMDP (National Marrow Donor Program) https://gvhdalliance.org/
GVHD Alliance https://gvhdalliance.org/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Peggy:
Hello, everyone. So, today we have the honor of having a dear friend and doctor to share his thoughts about what happens when you get home, all the side effects, how do you transition?
So, today we welcome Dr. Navneet Majhail, the Physician-in-Chief of Blood Cancers, and the director at the Sarah Cannon Transplant and Cellular Therapy Program at TriStar Centennial of Sarah Cannon Cancer Institute.
Dr. Majhail:
Peggy, thank you for the invitation. As you know, this whole topic of transitions of care is so near and dear to my heart. I've done a lot of work around this area and as a practicing hematologist, practicing physician who cares for patients who receive transplant and cell therapy, it's such a big deal.
It is so important to patients and caregivers and so forth for them to have a good outcome to get through this journey successfully. I mean, these periods are obviously periods where things can fall apart. That's why this is so important.
Peggy:
Absolutely. So, let's get started. Like I said, we're going to talk about getting home post-transplant, the transition. Why is this time point in transition so important?
Dr. Majhail:
So, Peggy, as you think about what our patients go through as they go through their journey of transplant at cellular therapy, I think there are two major transitions that happen. One is when they come to a transplant center or a cellular therapy center, or initial consultation and when they transition back to their home and community.
So, in that context, there are a couple of reasons why this happens. As we all recognize that this is highly specialized care. This is very complicated, and you need a specialized team to do it well.
And the second piece is, given its specialized nature, everybody can't offer it. So, it's available only at select centers in the country. And if you're lucky and you live in the same city as one of those centers, then it's all good. I mean, more of your care can happen in that context.
But as you and I know, many of those patients don't have that luxury. They have to either travel, leave their home, leave the community, go to another place to get this care, and once they're done, they have to come back.
So, again, I think that's the reason we are talking about this. I mean, it'll be nice if there's just one or two physicians, or two people or two teams, one or two teams taking care of your care throughout.
But again, for the nature of this treatment process, you have to go back and forth. And that is why it's so important to talk about this topic.
Peggy:
You are so right. We hear this all the time, and I know that you're going to break this all down for us. So, I'm just going to let you have at it and tell us exactly what you think about when the patient gets home, the role of the caregiver, getting back with the community doctor, tell us what you think.
Dr. Majhail:
Yeah, Peggy, I think if we step back a bit, so if we take this up to a higher level and we've talked about and emphasized why this is important, but it's also so complicated. There are so many pieces to this conversation.
So, again, now there are so many perspectives we have to keep in mind because it's challenging for everybody. So, again, as you think about the key people who are involved, key stakeholders who are involved, where there's an immediate impact, obviously the centerpiece of all this is the patients and their loved ones. The patients and their caregivers. That's a starting point.
But then you've got the impact and the implications for the transplant center. You've got the impact and the implication for the referring hematologists, oncologists, the oncology physicians in the community who have been the main linchpin in taking care of those patients.
Then for some of these pieces, you go beyond that ecosystem. I mean, the primary care physicians. So, as I think about who's involved here, I mean, you've got the patient and the caregiver, the loved ones at the center, but then we have these key stakeholders. That's the transplant center, the referring Heme/Onc, as well as the primary care physician or provider close to home.
And then there are what I would say are the secondary stakeholders or secondary kind of altering ecosystem that is as important and partly depends on what the patient's needs are.
So, that is things like behavioral health, physical therapy. I mean, things like even the payers. The insurance companies that take care of these patients and so forth. So, it's trying to think through what piece is important for what person as we think about managing patients through this process.
So, again, I think we can break this down, but let's start with the patients and caregivers first, right?
Peggy:
Sure.
Dr. Majhail:
Yeah. So, because that's the most important piece because at the end of the day those are the center of attention here. At the end of the day, we are here because of those patients and their families. So, that's the starting and the endpoint for us, if you will, right, Peggy?
Peggy:
Wonderful.
Dr. Majhail:
Yeah. And as you think about this we can go into more details as to the how. I mean, how do you make this transition as we proceed in our conversation? But again, I think the why piece is pretty straightforward.
How do we help patients get the best outcomes of this procedure? I mean, patients are going through a lot. I mean it's a risky procedure. There are side effects involved. It's a high stakes procedure because I mean, it's high reward, but high risk as well, if you will. And it's all very complicated.
And as we think about this transition, I think the main piece is how do we help patients navigate this transition based on what their needs are. Again, I'll emphasize based on what their needs are, because different patients have different sets of needs and we support the need based on what's going on with them, their diagnosis, complications, risk of complications, their health literacy, how far they live, their socioeconomic status. I mean, what disparity issues they may be facing.
So, that is where I think we start. And I think that would be something we all have to think about as we think about these transitions.
Peggy:
It is so true. There are so many moving parts to all of this. And even whether you have an allo or an auto transplant, that weighs into it as well, correct?
Dr. Majhail:
Yeah, absolutely. And I think as we continue this conversation here, Peggy, one of the main take-home points for your listeners I want to emphasize is there is no one size that fits everybody. At the end of the day, it has to be centered and aligned to what the needs for a given patient are.
So, I mean, that's where I think we need some flexibility. We need some ability to flex and obviously be dynamic based on what a patient’s needs are.
And the other thing to keep in mind is patient needs change over time. So, you may need more support upfront, and then as you recover, do better, I mean who's doing what changes. The role of the transplant center changes what's happening, hopefully and the community goes up.
And on the other hand, as you're going through this journey, sometimes complications come up down the road. So, again, I think that flexibility and that ability to be dynamic is so important.
Peggy:
You are so right. Before we move on, I just want to ask one question about the caregivers. What's your best tip for when the caregiver is now at home, the staff at the hospital is no longer there, what is the one most important thing for the caregiver to remember when they get home?
Dr. Majhail:
That's a tough question. That's a very tough question. And again, I think as you're aware, this body of research, there's this whole body of research in our field that talks about the impact on the caregiver as a whole.
So, I mean, and to be honest, we're not just treating a patient. We are treating their family and their caregivers as well, because they go through a lot. They sacrifice a lot as well in this process. And I think we documented through research, increased rates of depression, distress, a whole variety of things that these caregivers go through.
And this is just my personal opinion. If I had to say what I would advise caregivers to do as they go through this journey is taking care of themselves.
Peggy:
Great. Yeah.
Dr. Majhail:
I mean, we got all these resources to help them out. They're committed as well. They're always there. But this is not like a surgery where you do it and you recover in a week, 10 days, and you're done.
I mean, this is a journey that is many months long. Sometimes if people get complications, like graft-versus-host disease, it can be years long, right?
Peggy:
Yes.
Dr. Majhail:
And I think in that context, I mean, at least the thing that comes to mind most as I think about the journey of our caregivers, patients’ caregivers, is taking out time for themselves and taking care of themselves because sometimes I think they get burnt out.
And I think sometimes they end up affecting their own health, if you will, and their own well-being because they're so committed, they'll always be committed. I mean, I've never seen a caregiver — it's very rare for a caregiver to lose their motivation and commitment for the loved one. But I think it's taking care of themselves.
Peggy:
That is so true. And I think that is a great thing for us all to remember. Let's talk about survivorship care plans. I know some centers have them, some don't. What do you think about that?
Dr. Majhail:
So, Peggy, let's start by talking about what are survivorship care plans. And why are they important as we think about these care plans …
So, basically, a survivorship care plan is a tool. It's a tool that has information on a patient's cancer type. It has information about the treatments they've had. It talks about the consequences, the complications to anticipate about the treatments and the cancer, and then also provide some recommendations for what is the preventive and follow-up care patients need to focus on and ideally also provide some resources for rehabilitation, if you will.
How do you get back to work? I mean, how do you go back to school? How do you integrate back into society? So, to be honest, there's a lot more research that has been done outside blood cancer, looking at survivorship care plans. I think breast cancer is an area where there is a lot of learnings we've applied to our field as well.
And basically, it's a tool (that) can be an electronic tool, can be a document, a paper document, if you will, that summarizes what transplant you've had, what are some of the details or some of the elements of your transplant process that are going to impact what your long-term care, your screening and preventive practices are going to look like.
So, that is what a survivorship care plan is. And that is important because it summarizes your transplant experience. It summarizes what complications you may have had. It also puts together based on some of the published recommendations, and we'll come back to that in a moment, Peggy.
So, as you think about what, as a field and experts and based on the research out there, what do we suggest should be an optimal way to look out for and prevent complications and build up your health. So, these care plans also summarize that as well.
So, again, I think at a high level, as we think about our transplant patients, that is what a care plan does. It summarizes your transplant experience and tells a patient what … and not just a patient, even their providers. Their referring physicians, primary care physicians, other healthcare clinicians who may be involved in the care. What does their care look like or should look like as they go forward.
So, it's a tool for summarizing information and facilitating care coordination as those patients go forward.
Peggy:
Terrific. Does every center give out a survivorship care plan?
Dr. Majhail:
I don't know, and I don't believe they do. But I think that certainly is an aspirational state. I think more programs are heading towards that direction, partly because of increasing research in this area. I mean, a few years ago we did a trial or a study that was sponsored by PCORI, the Patient-Centered Outcomes Research Institute.
And basically, it was a study where we had 500 patients who were assigned to either the routine follow-up care, across, I think close to 50 transplant programs across the country in the U.S. who were either usual care or they were assigned to this survivorship care plan that we generated based on data that comes through our registry, the CIBMTR, the Center for International Marrow Transplant Research.
And in that study, Peggy, we showed, and these were patients who were two to five years post-transplant. And what we showed was that just the provision of that survivorship care plan document, it was just a paper form, just the provision of that document cut down the rates of distress and increased the mental component of the quality of life those patients experienced at six months after this intervention.
So, just a simple intervention. And again, as we got some feedback from patients at that six-month interview because we had our study team who basically called those patients and asked them, “Hey, what'd you guys think, I mean, of this tool?” And asked, “How did you apply it?”
I think the feedback was mostly positive, that again I mean, these are the things we need to think about. For example, for some of those patients, it reminded them, I mean, you've got the leukemia and the transplant piece you're focusing on, but you may still be at risk for things like lung cancer or colon cancer or breast cancer, and what you need to do for that.
And again, for many of those patients, their other providers appreciated that nice summary, which basically a summary of what do they need to do. So, that is where we found that instrument to be very useful.
Now, coming back to how often it is being used in practice, I think based on some of this research I just talked about, I think hopefully both centers are applying it, it is now a part of our quality processes as well.
So, most transplant sectors in the U.S. are accredited by FACT, the Foundation for Accreditation of Cellular Therapy. Now, it's a part of the standards there as well that there has to be some mechanism of long-term follow-up for patients that are transplanted.
So, even though it may not be universally applied, I hope it's getting more and more out there as we think about this. And one of the focuses here is patients. And I think it's fair for patients to ask their transplant centers, “Hey, do you give out a survivorship care plan? And if you do, where is mine? If you don't, can you please give one to me?”
Peggy:
You just read my mind. I was literally thinking that we have to make sure people ask for these things and first of all, let them know about it, which we're doing. And then empower them to ask about it, because that's how we'll make this change.
Dr. Majhail:
Yeah, no, absolutely, Peggy. And again, as an example, I can tell you what we do in our Sarah Cannon programs. So, for example, at our program here in Nashville, where I practice, what we do is at day 100. So, we do this at certain time points post-transplant, day 100, a year, two years, five years, and so forth.
But at day 100, we have our APPs, our advanced practice providers have what we call a long-term follow-up visit with our patients. So, what they do is they sit down with the patient and it's like a 90-minute visit.
And as patients come up to this visit, they get all the testing that we need for the long-term follow up, of course, what we need for cancer for sure. But then things like the cholesterol level. If they’ve been on steroids — to look at bone health. If they've had a lot of risk factors for cardiovascular disease echoes and whatnot.
So, all that is done in the runup to this visit. And that is basically coordinated by a nurse coordinator. So, when the APPs sit down with the patients for this long-term follow visit, they go comprehensively through all of the testing that has been done, they incorporate all the guidelines that are out there for long-term follow up.
And then they basically formulate a document, like a multi-page document that lists out what needs to be done by when and who is responsible for it. And that's given to patients. And then a copy of that also goes to the referring physician as well as their primary care physician. And any other providers who might be engaged in that patient's care.
So, again, that is what we do across our Sarah Cannon Transplant & Cellular Therapy Network programs. But again, I think there are some variations as to how people apply this across different centers.
Peggy:
And could you repeat the name of that visit, the acronym for that?
Dr. Majhail:
It's the LTFU visit or a long-term follow up visit.
Peggy:
Okay, got you.
Dr. Majhail:
So, it's a dedicated time with an advanced practice provider. So, I mean, they're the ones who do these visits where it's just one-on-one time focused on preventive care, general health maintenance, and what does follow up look like as they go forward?
Peggy:
This is terrific. I think that's great to know. And you mentioned the community oncologist, so I'm imagining if someone can walk, get home, and it's time to go to see their primary or their oncologist, to have this care plan in their hand, I mean, what a gift to that doctor. That's not their focus, post-transplant is their focus, but they're not in a transplant center every day. So, to have that roadmap must be so wonderful.
Dr. Majhail:
Absolutely, Peggy. I mean, I feel for my colleagues who are in the community as hematologists, hematologist oncologists, or primary care physicians who are trying to take care of these patients because they're so busy, they're so busy taking care of — they're barely keeping their heads above the water.
This is so specialized. That's the reason those patients come to us. They don't have the full knowledge and education about what these issues are. I mean, they're barely keeping up with the breast cancer, colon cancer and leukemia here.
I mean, to think about graft-versus-host disease or what happens to these transplant patients, which is I mean, at the end of the day it's such a rare event is a challenge for them, and they don't have the time and the resources to handle some of this.
And as I talked about the trial that we did, where we looked at some of the opportunities to get these survivorship care plan applied in the community. As we came up with that study, we did some focus groups of patient and social workers, nurse coordinators in our community, colleagues who take care of these patients.
And I think one of the big thing they said was, “Hey guys, I don't have the time to figure this out. Just tell me what to do and I will do it. And I'll take care of this.”
And it's some other research I've done, and we published a few years ago where we surveyed some primary care physicians in an integrated healthcare network. I mean, those primary care physicians. Now we are not talking about oncologists. We're talking about primary care physicians who are one step away, sometimes for some of these oncologists and sometimes not because they're the only resource as these patients go back to the community.
And the responses we got from those primary care physicians, they were like, “Hey guys, it's hard for us to figure out what to do about things like cancer recurrence, things about cancer specific complications.”
But as far as psychosocial concern or care is evolved as far as general healthcare is concerned, managing cholesterol, second cancer screening, that's general population focused, they're happy to do it. They feel pretty confident about doing it.
So, again, I think that is where a survivorship care plan like this can lay out. It's like a roadmap as to what you need to do as you go forward, as you think about this.
Peggy:
Wow, you've given us so much to think about. This is really great. What other advice do you have for folks? I think of one very special survivor I know who since his two transplants had to have every tooth in his mouth pulled out because of GVHD.
And he has a smile on his face every day because he is just so happy to be alive. He said, “I hate it, but I'm not going to complain because I am here. I get to see my grandchildren be born.”
But I wonder when I think of someone like this gentleman, had he maybe had more education about dental needs. I mean, in that survivorship care plan, is it included the things to do when you get home, make sure you're going to the dentist and the eye doctor and things like that?
Dr. Majhail:
Yes, absolutely Peggy, that's a part of this. So, again, stepping back a bit here, as you think about what are the elements that people, and by people, I mean patients, their physicians locally, other healthcare providers who might be involved in the care need to think about we have some guidelines for that.
So, in 2012, well, I mean, starting even before that, in the mid-2000s, we had the initial draft, which was updated in 2012, where we basically brought a whole bunch of international colleagues who are experts in transplants survivorship here and GVHD to think about what are these screening practices and long-term follow-up guidelines that patients and providers need to follow.
And they were actually just updated and published two months ago. So, Dr. Seth Rotz from the Cleveland clinic, Dr. Neel Bhatt from the Fred Hutchinson Cancer Research Center, and Dr. Rachel Phelan from the CIBMTR and the Medical College of Wisconsin led this international effort where they brought together these experts again, brought them to consensus for all these issues, and also looked at the latest research and literature out there.
And what they've done is they've put together a document or a paper that, like I said, was just published in February of this year in our journal transplantation and cellular therapy. And what it does is it goes organ system by organ system, eyes, oral care, lungs, kidneys, liver, skin, bone health, reproductive health, sexual health and so forth, quality of life.
So, and it goes through things organ system by organ system, issue by issue, and puts out what needs to be focused on for patients as a whole, and then breaks it down based on what their specific circumstances might be.
So, what we do for allogeneic transplant recipients will be different than autologous transplant recipients. So, if you have GVHD, what you need is going to be different than someone who doesn't have graft-versus-host disease.
If you've had a lot of steroids — I mean, you get the idea.
Peggy:
Absolutely.
Dr. Majhail:
Yeah. So, they've forced out what are some of the big elements that define this follow up care. And then they have listed out organ system by organ system, issue by issue as what that looks like.
Now in the past we work very closely with our partners like the BMT InfoNet, the nbmtLINK, the NMDP and so forth, to translate these guidelines into materials that are patient friendly. So, the first step was to bring all these docs into consensus. As you can imagine that warrants a Nobel Prize once you can do that.
That was the first step. So, and I think over this coming year again, we'll work with those same partners who translate these recommendations into patient friendly materials and so forth, and also into an electronic format that people can use and so forth.
So, again, it's a work in progress, but I foresee some of this coming through in more of a patient friendly and caregiver friendly format in the next few months. And why that is relevant is going back to your patient.
I mean, again, you're talking about the teeth and oral care, but since that patient has had graft-versus-host disease, I'm sure there are other things that are on that patients or his care team’s mind as well. And this tool or this roadmap, if you will, with the guidelines that are out there, can laid out as to what are the things to think about as you think about that patient's long-term care.
Peggy:
Absolutely. And I believe I was a part of this updated version. You know what, we're going to make sure we put that in the show notes where people can access that report. I would hope that it's available to all patients.
Dr. Majhail:
It is available through the journal website. And it's not … I mean, anyone should be able to access it.
Peggy:
Okay, great. We'll work on making sure that's in the show notes, because that is a gift. Indeed. I know it took several years for it to happen, and we need access to that for sure.
Dr. Majhail:
Yes. And Peggy, again, I recognize you were a part of the panel, and thank you for that, because I think this was the first time we included patient advocates into this process early on. I confess, in the past it was an afterthought.
Peggy:
That's okay.
Dr. Majhail:
Here it is. I mean, here, use it. And I think obviously having you involved, I believe Sue Stewart from BMT Info Net was involved as well. I think having you both and others as a part of the genesis of this process was very helpful and instrumental because it certainly helps us stay honest with respect to what's important for patients.
Peggy:
Thank you for that. We appreciate it. And there are other resources such as the GVHD Alliance, we'll put those in the show notes. That's a collaboration of several of the organizations you just mentioned. We've been working really hard to help create a central collaborative effort for folks with GVHD.
So, we'll make sure these resources are listed because they're needed, and they are appreciated. We have the most wonderful constituents. They really appreciate things like this. They want to know, they want to feel empowered.
So, thank you for your time today sharing so many wonderful ideas that we can all use to make it easier for everyone so they can live their best life and get on with the business of living, right?
Dr. Majhail:
Absolutely. Peggy, you're spot on. And again, I think everything we've talked about, I mean, survivorship care plans, transitional care, I think a big shout out to our nurses, nurse coordinators and social workers who be honest are the linchpins who really make sure patients … they often handhold our patients and caregivers as they go through these transitions.
But I think as we think about everything we've talked about, there are tools. They are the means to an end. They're the means to an end as to how we help patients through this journey. And I am a firm believer that patients and their loved ones, they have to be their own advocates.
So, again, these are tools that can help you get there. And again, recognize different patients may have different ability to advocate for themselves, but it's how you use these tools that are out there that we are trying to develop to help patients get through this journey successfully.
Peggy:
Wow. I just can't thank you enough. This has been tremendous. Any last thoughts before we finish up here today?
Dr. Majhail:
No. Peggy, I think this has been a great conversation. We've recognized that these transitions of care are so important because this is where you can possibly have the ball drop, if you will, as patients go through this process, because our healthcare is so fragmented.
I mean, it is just the reality of what we live in. It is so fragmented. And that is why we are making sure that these transitions happen in a good way. In partnership between the transplant centers, the referring physicians, and us all keeping patients in the center is so important.
So, thank you for giving me the opportunity to share my thoughts about this process.
Peggy:
We are honored to have you. Thank you so very much.
Dr. Majhail:
Thank you so much, Peggy. It's been a pleasure.