2020 National Cancer Institute (NCI) GVHD Patient Advocacy Summit

Advocates for graft-versus-host disease (GVHD) patients discuss treatment research and unmet needs of GVHD patients and caregivers.

Presenters:  Michelle Bishop PhD, Coping with Cancer & Caregiving, LLC;   Guy Bouguet, France Lymphome Espoir;   Peggy Burkhard, nbmtLink;   Meredith Cowden MA, LPCC-S, Meredith Cowden Foundation;   Chiara DeBiase, Anthony Nolan;   Christina Ferraro MSN, CNP, BMTCN, Cleveland Clinic;   Naomi Pineda, GVHD survivor;    Katie Schoeppner, MSW, LICSW, Be The Match,   Susan K. Stewart, BMT InfoNet

Medical Advisors:  Steven Pavletic MD, National Cancer Institute;   Helene Schoemans MD, University Hospitals Leuven;   Kirk Schultz, MD, British Columbia Children's Hospital;   Daniel Wolff MD, University Hospital of Regensburg

Run time is 2 hours and 10 minutes.


  • Biomarkers that predict the severity of GVHD need to be identified so a more targeted, personalized GVHD therapy for each patient can be developed to prevent or treat chronic GVHD
  • Quality of care for GVHD patients varies, depending on where they get treatment.  Optimal care should be available to all GVHD patients.
  • Follow up care programs for transplant recipients should be a team approach, incorporating not just physicians, but mental health professionals and other specialists as well.

Key Points:

(00:10:37): Quality of life should be included as a research endpoint in chronic GVHD prevention trials

(00:11:44): Improved education for clinicians is needed to increase the likelihood of early diagnosis of Chronic GVHD

(00:16:05):  Better patient access to transplant teams for information could reduce dependence on less reliable information sources

(00:22:57):  Regional, multi-disciplinary GVHD clinics might make first rate GVHD care available to patients, regardless of where they live

(00:26:29): Barriers to clinical trial participation should be identified and addressed so more progress can be made in finding personalized therapies for patients with chronic GVHD

(00:29:39): Clinical trials to prevent and intervene early in GVHD are important, but so are trials to help people with non-reversible GVHD manage their life.

(00:56:37): Less than half of transplant recipients who have anxiety or depression are being treated with medication or receiving therapy from a mental health specialist.

(00:57:00):  70% of transplant recipients experience cognitive problems (difficulties with learning, memory, attention, organization)

(00:57:54): Caregivers of transplant recipients also experience psychological stress.

(01:01:31):  There is disparity between how patients feel about their emotional health, and what clinicians perceive as the patient’s emotional status.

Transcript of Workshop

Kirk Schultz (00:00:00):  Introductions

My name is Kurt Schultz and I have the privilege to introduce this, I think, it's one of the most exciting sessions of the six sessions we've had. I see that we have about 120 people as participants and so very nice participation through this entire meeting.

I'll be introducing Meredith Cowden in a minute here, but just to go through a few housekeeping issues. If you have a comment to make, there is a chat function and you can just type in your comments. There is an open discussion for the end of the presentation. What you can do is push the raise hand function and that is, if you look at the bottom, there's a few little icons, one that looks like a hand, and you just click on that and it will then identify that you have a question to ask and you'll be moved into the discussion part for the open discussion. The last is, if you want to, you can also just type in a question into the Q and A section, and we will try to bring that, we will make every attempt we can to bring that to the attention in the open discussion section. We have a really, really tight, but very exciting schedule.

I'm going to turn this over to Meredith. By the way, I should just mention Meredith is a pretty amazing person. Are you CEO or president of the Meredith Cowden Foundation?

Meredith Cowden (00:01:25):

Oh, no, that's my father. He's the president. I just do the talking.

Kirk Schultz (00:01:30):

He's the president. But there is a foundation. It's the only foundation I know that is focused on chronic graft-versus-host disease. Anyway, I'll stop now. I'll blathering.

Meredith Cowden (00:01:42):  Background on NIH Chronic GVHD GVHD Consensus Conference

Thanks, Kirk. Hello, my name is Meredith Cowden, as Kirk said, and I would like to welcome you to the Patient Advocacy Summit and the very final session of the 2020 NIH Chronic Graft versus Host Disease Consensus Conference. For those of you who aren't familiar with the consensus, it was started in 2004 and has created guidelines for the diagnosis and the treatment of chronic GVHD. They've had two previous conferences that discussed ongoing research and treatment efforts and issues that needed to be addressed. This is the third consensus conference and the Patient Advocacy Summit, as well as the Industry Summit that happened this morning, are both new components. I think they're both very exciting and great steps forward, and specifically to help collaborate and work together as a larger group.

Meredith Cowden (00:02:33):  Advisory Committee for Patient Advocacy Summit

These are the people who are on the committee and who will be doing the presentations today. If you could go to the next slide, too. So then what we're going to do is, the goal today is we're going to discuss what the clinician researchers are currently working on in the prevention, diagnosis, and treatment of chronic GVHD, as well as manifestations of the disease that are particularly impactful for patients and also very challenging for the clinician. Then, we're going to go into three main topics of presentation. The first one is going to be focused on education and support. The second one will be focused on psychosocial issues and cognitive challenges, and the third on] survivorship and long term care. Throughout the whole piece, we're going to ask for your participation to have a larger discussion and a more meaningful discussion.

Meredith Cowden (00:03:32):  Introduction to Using Menti Polling Feature During Talk

If you could just now, and if you could please type in www.menti.com, it's up here on the screen, M-E-N-T-I dot com. Then, you should be seeing the screen that we have here, where it says "Mentimeter, please enter the code." In the box, will you please enter the code that we have here? 6696782. Then, hit Submit and then you should be able to go into the Mentimeter presentation partner. If you have questions, just put them in the question area or the chat area, and we'll make sure that we can get that for you. Then, this screen will pop up later on, too. Just to get that out of the way.

Meredith Cowden (00:04:26): Explanation of Q&A Session at End of Presentations

We're also going to have a question and answer session that will address any additional questions that you have. As Kirk said, type them in and we'll address them as we can. The ones that we can't get to today, we do have an email address that you can email the questions to us, or we can email you the responses. If they're of a more personal or specific nature, then please use the email to ask the questions. We also will have an extensive list of resources at the end of the presentation for you. We're not necessarily going to go through all of it, but they're there for you. There's a copy of it on the website of the entire presentation. Then, you'll also be able to have a PDF version so you can just have those for your own resources.

Meredith Cowden (00:05:11): Invitation to join international GVHD Patient and Caregiver Network

Lastly, I'd like you to consider joining the creation of an international GVHD patient and caregiver network. The idea is that it would link people globally who have chronic GVHD or who care for people with chronic GVHD together and provide advocacy opportunities, information opportunities, clinical trials, conferences, webinars, all sorts of stuff. It could be very, very helpful.

Meredith Cowden (00:05:40): 

Now, without further ado, I'd like to move into the presentation. I would like to introduce you to Dr. Michelle Bishop. She'll be talking about the etiology and prevention of chronic GVHD.

Michelle Bishop (00:05:58):

Thank you, Meredith. By the way, congratulations to you and Dr. Daniel Wolff on a job well done chairing this patient advocacy committee. You guys have done an amazing job.

Michelle Bishop (00:06:09):  Etiology and Prevention of Chronic GVHD

Hi, everyone. Katie Schoeppner and I were asked to review the manuscript from Working Group One, which focused on the etiology or causes and prevention of chronic GVHD. Dr. Kirk Schultz was our scientific advisor, and I'd like to thank him for his support and feedback. To summarize some of the key points of the manuscript, first and foremost, there was, of course, unanimous agreement that moderate to severe chronic GVHD can be debilitating and deadly and needs to be prevented. Several effective prevention strategies have been developed, but further research is needed. The key strategy and prevention is finding a balance between decreasing the greater severity of chronic GVHD while maintaining the graft-versus-tumor effect that GVHD provides, which can help to prevent relapse of the underlying disease. The ultimate goal is to achieve the highest graft-versus-tumor effect with a minimum amount of chronic GVHD.

 (00:07:06): Multiple factors contribute to GVHD 

This manuscript lays out the numerous and complex known causes of chronic GVHD, which are multi factorial. There are both primary and secondary factors, or insults, that interact and contribute to the development of chronic GVHD. The primary factors are immune cell driven causes from the donor cells graft and recipient. The secondary factors are insults related to tissue damage and dysfunction that occur from different sources, such as the conditioning regimen, infections, medications sun exposure, and changes in the microbiome and mucosal integrity. There are multiple immune cell populations involved that are important to study further and to potentially target for prevention.

(00:07:46): Potential Targets for New GVHD Therapy and Patient Risk Assessment

The paper identified these potential targets and described where, when, and how we might intervene at different time points along the transplant trajectory. There was discussion about how we can best assess or predict an individual's risk of developing chronic GVHD, and how to best balance that risk against the benefit of the proposed interventions being tested.

 (00:08:09):  Most important clinical endpoints for clinical trials to prevent GVHD.

Lastly, the paper focused on discussion of what are some of the most important clinical endpoints or outcomes for these prevention trials. Key points for patients and caregivers are that patients are benefiting from what we already know, but there's more to learn and to test and patients will benefit from this further research. As already mentioned, it is critical to the prevention of cancer relapse that chronic GVHD is not eradicated completely, which is important for patients to understand.

Now, I will add a caveat to that. This is true for some diseases, but maybe less important for others, especially non-malignant diseases. It is important for patients, of course, to talk with their physicians about how relevant this is for their particular disease. Also, there are important considerations to balance the benefit and risks of interventions at different time points throughout the transplant and recovery process.

 (00:09:06): How best to involve patients in prevention and treatment of chronic GVHD

In reviewing the manuscript, we wondered, might there be ways in which patients themselves could impact their own health recovery and chronic GVHD prevention directly? For example, as mentioned earlier, there are certain secondary insults that can damage tissue, which then contributes to the development of chronic GVHD. Could positive health practices of patients, such as reducing sun exposure or improving their oral health, help to reduce the damage of these secondary insults? If so, to what extent? If those behaviors did have a positive, significant impact, are there recommendations that could be standardized? To what extent do patients understand and comply with health behavior recommendations? Might there be barriers to compliance? Would it be useful to create patient provider information fact sheets? Would that make a difference?

 (00:09:55): Helping Patients and Family Members Identify and Report Symptoms of Chronic GVHD

We also wondered if patients fully understand what to look for and how to assess their own chronic GVHD symptoms. This is certainly important clinically, but also very important in the context of prevention trials. Chronic GVHD symptoms are not always easy to discern from other conditions or even from age-related issues. How do we best educate and empower patients and the community physicians who share in their care, in identifying symptoms of chronic GVHD? Also, how can we better involve family caregivers as they are often astute observes of patient symptoms and provide important corroborative information.

 (00:10:37): Quality of Life Should be Included in Chronic GVHD Prevention Trials

Lastly, our strong recommendation was related to quality of life, that it should be included in prevention trials. We felt it critically important that beyond clinical outcomes, such as chronic graft versus host disease relapse-free survival, the quality of life matters. In fact, to patients and family members, beside survival, quality of life is key. We need not forget that there are other health sequelae such as such as infections and side effects of immunosuppressants that may negatively impact quality of life, even if the grade of chronic GVHD is reduced. This matters immensely to patients. Therefore, quality of life domains and patient reported outcomes should be included in these trials. These should be assessed throughout the transplant experience starting prior to transplant, followed by periodic assessment at key time points post-transplant for an extended period of time.


Thank you so much. Now, Meredith Cowden will share comments on the manuscript from Working Group Two focused on clinical implementation and early diagnosis.

Meredith Cowden (00:11:38):

Thank you.

(00:11:44): Improved education for clinicians is needed to increase early diagnosis of Chronic GVHD

Clinical implementation and early diagnosis group, they had two main goals of therapy. The first was to provide updated recommendations for the implementation of diagnostic criteria to prevent late recognition of chronic GVHD. Then, the second was to outline future research to help identify the disease earlier, both systemically and with highly morbid manifestations. They focus primarily on three major organ groups. The first was skin and fascia, eyes and lungs. Then, they also provided guidelines for additional organs like mouth, liver, GI tract, and genitalia.

Basically, what they said is that early diagnostic efficacy is made possible by improved education for healthcare providers regarding the diagnosis of chronic GVHD, using shorter, more targeted training sessions, online platforms, teleconferencing, apps, et cetera. Then, also that routine evaluation for chronic GVHD outside of a clinical trial setting and moving it more into the clinical practice area would be beneficial, focusing on baseline status of patients before the transplant, at Day 100, and at followup visits that would ideally be every one to three months. Finally, talking about empowering the patients to learn about and monitor and report their own signs and symptoms using telehealth tools, which have ..they've become incredibly beneficial throughout the pandemic.

(00:13:18): Patients are often not diagnosed with chronic GVHD until symptoms are irreversible.

So what does this mean? Basically, a lot of patients who have chronic GVHD don't necessarily meet the NIH consensus diagnostic criteria until the manifestations are irreversible, even though there are signs and symptoms before they meet that criteria. Earlier diagnosis could potentially lead to better management and treatment of the disease, and reduce the negative impact that it has, like fewer symptoms and improved quality of life, reduced strain on the caregivers, et cetera. Finally, patients are the experts of themselves. The medical professionals are the experts of the science and the medicine, but patients and caregivers are the experts of their bodies and themselves. The guidelines encourage patients to participate in their own evaluation and treatment, creating that more collaborative approach.

(00:14:14): Observational studies of cGVHD patients 1-2 years after transplant.

Some of the things that they had recommended were observational studies of patients, at least one to two years post-transplant. One thought that I had was, maybe, extending the studies beyond that because as far as I could tell, I haven't read all of the literature or anything like that, but there aren't that many studies that focus on patients who are more than 10 years out. Sometimes the more morbid or the more rare forms of the disease come after the one or two year mark. Technology allows for an increased communication between the patients and the providers for self-evaluation. Thinking about the idea of creating apps that help patients to evaluate themselves, check their own symptoms. Maybe there could be reminders of, 'this is when you look for this' 'this is what you look for' , just to help to foster that communication. There are a lot of different scales that are very, very effective that could be used for this.

(00:15:17): Empower patients to more actively participate in care for cGVHD

Some other thoughts that I had were, potentially, increasing the participation of patients and caregivers in their follow-up really empowers the patient. If you think about it, an empowered patient has a stronger sense of self efficacy, they probably have higher self-esteem, their health improves as a result [inaudible 00:15:36] This was an idea that I got that could be very important.

Potential challenges are around, maybe, what the symptoms look like. Because the chronic GVHD symptoms might look like something different. They might be related more so to the transplant itself and perhaps late effects from the actual transplant. They might be GVHD or they might be something entirely different. Really being able to differentiate what that is.

 (00:16:05):  More patient access to transplant teams for information could reduce dependence on less reliable information sources

And as was discussed earlier in the conference over the last couple of days, biomarkers are very helpful in this. One key fact that I think is very, very important is the ongoing education of patients and providers, or more readily available access to the transplant team. Because the things that I've noticed, and that we've found, is that a lot of patients go to online platforms and support groups like a Facebook group to ask questions and post a picture and say, "This is what I've got going on. What do you think this is?" Or "What can I do with ... What's the best thing that I can do to help my mouth?" Or stuff like that. Really moving that communication between the providers and the patients, I think, is imperative.

 (00:16:52):  Involve cGVHD patients in design of cGVHD clinical trials.

Then lastly, a thought I had was in the involvement of patients and advocates and caregivers in the research study designs, so that they have a voice in what that potentially looks like and what their theory or thought on it could be, as well as maybe having them participate in the development of apps and different e-tools and stuff like that. That's my part.

Meredith Cowden (00:17:17):

Now, Susan Stewart from BMT InfoNet is going to talk about preemptive therapy. Sue?

Susan Stewart (00:17:23): Preemptive therapy to treat patients at risk of developing moderate or severe cGVHD

Thank you, Meredith. I appreciate that. My charge was to discuss the working paper that has been developed about something called preemptive therapy. What the manuscripts say essentially was that we know some general risk factors for GVHD, but predicting who has a high risk of developing a moderate or severe case of GVHD is not something that we know right now, and requires identifying something called biomarkers, which are tissue samples, blood samples, whatever biological markers that a physician could look at and say, "Aha, this person has a high risk of developing GVHD and particularly a moderate or severe cases of GVHD." We don't know that yet. We don't have the biomarkers and therefore, we're kind of shooting in the dark.

 (00:18:24):  Preemptive therapy for all cGVHD patients could cause unnecessary side effects in those who would not benefit from the therapy.

The thesis is that the severity of disease in high-risk patients might be reduced with preemptive therapy, which is therapy that's given before symptoms of GVHD appear or very early when GVHD symptoms appear. The thesis is further that if you give preemptive therapy to all patients, that could increase the risk of side effects in patients who would not benefit from the therapy. There's a reluctance to test preemptive therapy until we know who those patients are that are high-risk for getting the moderate or severe cases of GVHD and test it in them. And so they concluded by saying that trials to identify biomarkers and trials to test preemptive therapies will take something on the order of six to 10 years to develop.

 (00:19:36):  It may be possible to personalize GVHD therapy for patients in the future.

What does this mean for patients and caregivers? Well, what it means, if successful, is that in the future we may actually be able to personalize GVHD treatment plans for each individual patient. However, to do this, it's going to require that we identify those biomarkers that can accurately predict whether a person has a low-risk or a high-risk of developing moderate or severe GVHD. It's going to require clinical trials to test whether it's really true that if you give early treatment in high risk patients, that it actually does reduce the severity of GVHD. Then further, it's going to require us to identify which agents, which drugs, if any, if you give them to patients before symptoms of GVHD appear, are really most effective. Then finally, it's going [ require that we] ensure that all patients have access to whatever this best therapy is, which means that all transplant centers are capable of and are engaged in offering this personalized therapy to their patients.

(00:20:43): Research into preemptive therapies for GVHD needs to move at a faster pace.

Some things I thought about things to consider in reading this, can we shorten the timeline? We are not a patient crowd, even though they call us patients, and we really would like to see progress made much more quickly. If you look at the manuscript, learning the biomarkers, they think, would take about three years; clinical trials to test various therapies would take three to seven years; and then integrating the best therapy into standard practice would take an untold number of years. Is there a way to speed this up? I think, would be one thing that patients would be very interested in seeing.

A question I have, I don't know the answer, is it possible to do some of these trials concurrently, testing for biomarkers and testing prophylactically, some of the therapies upfront before GVHD gets serious? Is it really more dangerous to give patients this upfront therapy, even if they might not eventually benefit from it in order to learn about it, rather than allowing many patients to develop moderate to severe cases of GVHD?

(00:21:48): Do we need to rethink using peripheral blood stem cells (PBSC) for transplant, instead of bone marrow, since PBSC increases the risk of developing chronic GVHD?

Then, the other question that came to mind in reading this is what can we do now while we wait for more effective therapies to reduce the incident of severe GVHD? Reflecting back on what I see in the literature, including the literature that was presented at this conference, one thing we know is that peripheral blood stem cells, stem cells collected from the blood, are linked to a higher incidence of GVHD and chronic GVHD. The question in my mind is, why are we using them? Is it possible that we should be using bone marrow, which has a lower incidence of chronic GVHD in certain patients subsets?

 (00:22:30): Can known effective therapies to reduce the risk serious GVHD be implemented more quickly and systematically at all transplant centers?

The other question I have is, we now know that there are certain regimens, like giving cyclophosphamide post-transplant to patients, that seem to decrease the risk of GVHD. My question is: What are we doing? Is there a plan in place to expand the use of this therapy to all of the centers so that every patient, regardless of where you get your transplant, is having access to some of these newer therapies?

(00:22:57):  Could regional, multi-disciplinary GVHD clinics make first rate GVHD care available to all patients?

Then, the final thought I had on this, in thinking about being able to observe symptoms of GVHD earlier and starting treatment, is that we really have very unequal treatment and follow-up of patients with chronic GVHD in the United States. You may be lucky enough to be at a transplant center that's got a very robust GVHD program, or you may have been transplanted at a center that really doesn't have the resources to do a lot of follow-up on GVHD [patients]. Or you may be not be living near a transplant center anymore.

So I'd like to propose the concept of perhaps developing regional GVHD multidisciplinary clinics where patients could access state-of-the-art care without having to have been transplanted at one of the premier centers with premier GVHD, perhaps using a patient navigator to help patients sort through what their symptoms are early in the process and recommend a treatment that would be more efficacious than treatment that might be considered by, for example, a local healthcare provider who may not be as familiar with GVHD.

That's my summary. Let me introduce the next panel. That's the Treatment of Established cGVHD. Guy Bouguet and Peggy Burkhard will present.

Peggy Burkhard (00:24:26): We need to find less toxic treatments than systemic steroids for patients with chronic GVHD.

Thank you, Sue. I will be presenting. To summarize the findings in this manuscript, first of all, I wanted to say that chronic graft versus host disease is a complex disease with mechanisms that are still not well understood, unfortunately. We know that corticosteroids are toxic for patients, but unfortunately, they're still the frontline therapy. Chronic GVHD is a heterogeneous disease and is a leading cause of morbidity in allogeneic transplantation. Corticosteroids are still the systemic first line of therapy with heavy side effects, unfortunately.

Despite numerous new therapeutic treatments, the clinical and biological markers relevant for better success are still not yet identified. We want to change this practice. It's really important to better understand the systemic innovative therapy trials, compared to steroids. Systemic samples collection at all phases of the patient's journey is key to better understanding and addressing GVHD and design trials. We know that better coordination between center and industry in clinical trial design is a must. We also want to talk about large well-designed clinical trials for new agents should be promoted.

 What does this mean for patients and caregivers? It means better management for chronic graft versus host disease by optimized clinical trial designs, a more personalized approach to treatments. Then, you can do newly-designed algorithms, more sampling interventions. That's been talked about a lot this week. Better outcome with less invalidating disabling side effects. Of course, wouldn't we all love to see a better quality of life for our friends with GVHD, potential corticosteroid- free treatment of GVHD will be a wonderful goal.

(00:26:29): Barriers to clinical trial participation should be identified so more progress can be made in finding personalized therapies for patients with chronic GVHD

In this manuscript, some additional commentaries and ideas. What will it take to get these trials progressing faster? What are the barriers to clinical trials in progress in research practice? Because we know that GVHD has a multi-dimensional impact on the patient's quality of life. It's a heavier burden. Sometimes, oftentimes, than the original disease. Patients should be better educated in recognizing the first potential GVHD symptoms. Therefore, the goal of future clinical trials is for treatments to be prescribed in a more effective manner with our more personalized approach, either based on clinical phenotype or biological profile. Patient advocacy groups can and must help and promote these educational trials.

Finally, in conclusion, I want to say, in practice, minimal clinical progress has been experienced by patients for decades. Therefore, a more rigorous collaboration is necessary. Ideally, this must be a broader collaborative, including an international presence, academia, medical societies, and industry. It just has to be the standard. Thank you.

Chiara DeBiase (00:27:51):

Thank you very much, Peggy. I think that's now over to me. My name's Chiara DeBiase. It's my pleasure to finish off this part of this afternoon. Christina and I were asked to review the final manuscripts of highly morbid forms of chronic graft versus host disease. Thank you.

(00:28:13):  Chronic GVHD creates both physical and emotional burdens for transplant recipients.

It's abundantly clear, reviewing the paper, listening to the evidence over the past couple of days and from listening to the patients that we advocate for, living with the chronic changes associated with GVHD places a huge physical and emotional burden on transplant recipients. Our current regimen to manage highly morbid forms have proven themselves to be both, at times, unpredictable and less than reliable, which in turn negatively impacts on morbidity and long-term survival.

What we also know from collaborating and co-creating services with people with lived experience of transplant is that the impact of chronic GVH goes far beyond the physical. In fact, who they are, their role in the household, the role of a caregiver, a parent, a partner, their role in the community and their professional self. The list is endless, which is why we are emphasizing the criticality of ensuring patients have access to trials such as the identification of predictive biomarkers, combined with patient appropriate real world outcomes, such as quality of life and why these are so very important.

(00:29:39): Clinical trials to prevent and intervene early in GVHD are important, but so are trials to help people with non-reversible GVHD manage their life.

We highlight the value of early intervention and prevention, but we also want to stress the great importance of the trials that offer hope to those people living with the non-reversible aspects of chronic GVHD, both that place the value on timely supportive care interventions. And why the meticulous collection of patient-reported data is so important to identify and deal with the long-term complications, as well as monitoring outcomes. We can only improve in this challenging area by openly and willingly sharing our knowledge and best practice. But that relies on the reciprocity between centers and the authentic, meaningful involvement of patients and is therefore everyone's responsibility.

Christina Ferraro (00:30:30):  Patients need incentives to participate in clinical trials.

Why is this important for patients and caregivers? Ideally, we would have more patients participating in clinical trials, which would increase our knowledge and impact on patient care and form more definitive answers. This includes many samplings of blood tissue, tears, stools, et cetera, and often frequent testing like breathing tests or bone density. Often, we also require patient reported outcome surveys. But this can lead to sample and survey fatigue and can be very time consuming and costly as patients have to be at the clinic often. That can cost more money out of pocket just for traveling, et cetera.

We are asking those who work with research and with patients to consider increasing incentives, reimbursements to patients and their caregivers to help offset their pocket expenses when enrolling in clinical trials. Then, the research should be very thoughtful about what samples are required, what is actually needed for the studies, as this can be very burdensome for patients.

Helen Schoemans (00:31:52):  Audience Polls Using Menti

Thank you for this great introduction. Now we're getting to the interactive part of the presentation. We're going to need all of your help. My name is Helen Schoeman from the transplant division from Belgium. I will try to walk you through this.

As now we just showed you earlier, we need you now to take a device. Any device you have at hand, for example, your cell phone, and then type into your cell phone, into the browser, menti.com. www.menti.com. Then, you should get to the screen that you see here on the right hand side. It's critical that you put in the code to connect with us. That's 6696782. Then, you should press on Submit. You go to this website, you put in the code, and you press on Submit. This will allow you to let us know what you think, because we think that this is an absolutely crucial moment.

This is unique. There are more than 170 of us here, and we can change the future of GVHD care and managing. Okay. So let's try ... I hope every one of you has gotten to the website. Please keep it open because this is going to come back throughout the whole session.

So, you can vote now and then you will see on the bottom right hand side how many people have voted. So, we're going to try this for a maximum of one minute. The idea, if you have not gotten there yet, you need to type into your browser www.menti. com. And then you put in the code 6696782. Then then you press on submit and you get to this question and you also press on submit once you have voted, because this allows us to see your answer. If you don't press submit, we don't know that you're voting.

So, you're seeing here that people are getting it because there's 70 of us who've already voted. I'm giving you another 20 seconds to tell us what you think. And I would really enjoy it if we could get to a hundred, so please go to menti.com, type in the code, and tell it whether you've used Mentimeter before.

Steve Pavletic (00:34:42):

Even I can do it.

Helen Schoemans (00:34:50): Poll:  Who is participating in the Patient Advocacy Summit?

Okay. So, let's try the next question. Wow, thank you, Steve. I'm glad. Because this was just a trial question and the majority find it very easy to do. So, this is the next question for you. So, please tell us who you are. So, you have one minute again, and you have to tell us whether you are a patient or a healthcare provider or working in the pharmaceutical industry or caring for someone. So, I'm seeing that you're getting this much better now because there are already 50 people who are voting. Please get to a hundred. That would be wonderful. So, for those of you who haven't found the website yet, it's menti.com. The code is 6696782 and then you have to press submit.

(00:35:37):  Poll:  Majority of Summit Participants are Healthcare Providers

Okay. So, it's interesting to see that the majority of people that we have on board now are really healthcare providers. But we do have 13 patients voting and five caregivers voting, which is really interesting. Okay, good. I think people are still voting. I'll you another minute because it's really important for us to know whether we have patients onboard or not. If you are a patient, don't hesitate to vote along with us because we're really looking for your point of view more than anything else. Okay. So, half of us are voting right now and we're up to 80 people voting. Good. Okay.

So, the next question is, how old are you? Sorry for asking for details because but it's just for us to get a sense of demographics.

(00:36:56): Poll:   Age and gender of Summit Participants

So, we don't have anyone under the age of 18 and the majority of us are my age. Okay. So, we're getting up to 80 voters. So, we're going up. I think people are starting to understand the system, which is wonderful. Okay, great. And then we'll go to the next question.

Next question being, do you mind disclosing whether you are male or female or anything else that you identify with? Remember that you have to press submit, because if you don't submit, we don't know who you are. Okay. So, it's usually like that. When we do surveys, we always have more females answering. Don't ask me why, but that's what usually happens. Okay. So, very good. Now that we have an idea of the demographics ... and please join us, even if you haven't answered the first questions. It doesn't matter.

(00:38:16): Poll:  Should patients take an active role in managing their disease?

The next question is very interesting, especially if we get answers from patients on this one, because we'd like to know how you feel about the fact that GVHD patients should take an active role in the management of their disease. So, let's see how that looks like. Okay. So, maybe this is a little bit of a self-fulfilling prophecy that everyone who's attending this session believes in self-management. And so, knowing that the majority of us are in favor of patients taking an active role, how should this look like? And so, here you can write anything you want into your phone, you can put individual words, or you can put an essay, and just submit. And again, I'm going to give you one minute to do that. And you will see everyone's comments coming up on the screen. And we really need this information because we all believe that this is important, that there are facilitators and barriers.

Great. So, thank you for volunteering your comments. You can keep going for another 30 seconds. I'm seeing education coming back quite a bit. Education is coming in as something very important. Information, support. It's a two way road. I absolutely agree. Education comes back again. Care plans. You can keep voting. Okay. Okay, wonderful.

So, if you have anything else you want to add, you can add it now in chat and we're going to go to the next presentation. And it happens that the first presentation we wanted to share with you was Education and Support of Patients and Caregivers. So, we have one more question from the organizers, Guy, Peggy and Katie.

We wanted to know from you what is, according to you, the biggest barrier to obtain information? So here, please type in a word to convey what you think is the biggest barrier between you and GVHD information. Okay. We're seeing communication is a central theme here. I'm seeing knowledge, access. Definitely an issue. Knowledge, access, time. These are all important things which are preventing us from getting GVHD info. And so, now I think Katie is going to take over and explain what that group has prepared.

Katie Schoeppner (00:41:54): 

Fantastic. Thank you, Helene. So, I appreciate everyone quickly learning how to use Menti and putting in those barriers. Lots of themes there around communication and knowledge and time. So, I just want to start today by thanking you for joining and being a part of this really important session. I look forward to sharing some of the information and perspectives, the education and support provided to patients who are struggling with chronic GVHD, and specifically how we can improve in this realm.

And before I start, I want to acknowledge and thank my collaborators on this presentation, Peggy Burkhard, and Guy Bouguet for their incredible commitment and the insight that they brought to this topic.

Katie Schoeppner (00:42:54):  Quality of life is more than just having a heartbeat.

I work at the National Marrow Donor Program, Be the Match, and our organization, our mission, is to save lives through cellular therapy. This is obviously a lofty goal on its face, and it's even more lofty when we consider what it really means to save a life. I'm guessing that all of you would agree, and other presenters have made reference to this, that life is a whole lot more than a beating heart or a functioning organs. It's about doing the things that bring us joy, fulfilling vocation, meaningful relationships, and even just having fun. By defining life this way, it's easy to see why addressing the need for support and education about chronic GVHD is so important. This condition is often the price patients pay for transplant, and we can help ease its burden by improving the education and support provided to patients who have it.

Katie Schoeppner (00:43:55): There are significant barriers for patients to get information about chronic GVHD.

Unfortunately, there are significant barriers to getting patients and their loved ones the information about GVHD and support required before, during, and after transplant. Today, we're just going to scratch the surface of these issues and provide some potential paths to solutions. The social media post that you see on the screen here really speaks volumes to the difficulty faced by patients living with chronic GVHD. This real patient, this is a real person, asks, "Could anyone please tell me how long it takes to cure GVHD? Does chronic GVHD have a cure? I'm losing hope." What comes out in this short post is confusion, uncertainty, and despair, all things that we can work to eliminate by providing better support and education to our patients.

So, what are the barriers to getting patients the support and education they need with regard to chronic GVHD? Like most things, this is a multifaceted problem and there are a number of challenges. There are broad systemic issues, like the fact that there are many patients who lack access to the internet or don't have the technological expertise required to navigate the resources that exist online. There's also a general lack of understanding among patients and providers about the wealth of information that is available through the various patient advocacy groups such as Be the Match, the nbntLINK, BMTInfoNet, and many more worldwide. Patients don't always know how to get to the trustworthy information and may instead rely on the dreaded Dr. Google, who does not always give the best advice. Patients also may not have been informed pre-transplant about the realities of chronic GVHD, making it harder to prepare for the possibility of living with this condition.

Lastly, there are barriers that exist within our complex medical system. Patients living with chronic GVHD often struggle to know who to go to for their questions and concerns because we don't often succeed at using a unified approach to patient care among the many specialties that need to be involved with our patients. And to make it even more difficult, local family doctors, or even community oncologists, or hematologists who are often asked to assume the management of care for patients post-transplant, don't always have the knowledge or tools that they need to assume the management of care for those patients. They might feel ill-equipped. So, from the patient's perspective, what all that leads to is confusion and feeling like their care is fragmented.

(00:46:58): Educating patients about chronic GVHD varies greatly among transplant centers.

The current standard of care for providing support and education about chronic GVHD is a pretty loose outline of how it goes. Typically education and support are provided by the transplant center upon referral for transplant and then again after hospital discharge. The type and extent of education and support varies by center. Patients often will get a big binder of information during their transplant workup. And some centers have really robust long-term follow-up clinics or survivors' programs after transplant. Education materials that are provided by the hospital or clinic are usually written and often paired with verbal teaching, either individually or in a class.

(00:47:41): Knowing the optimal time to deliver information to patients about chronic GVHD can be difficult.

And as I mentioned earlier, providers often try to strike a balance when educating patients about chronic GVHD pre-transplant, and may tend to avoid talking really frankly about the grim realities that might come with having chronic GVHD. Patients may also get less detail about the possibility of developing and needing to manage chronic GVHD right around the time of hospital discharge, when the focus is on more practical needs, like minimizing infection risk and teaching about how to handle a central line. So, many of these approaches are useful to patients. There's no doubt about that. However, each individual is different and when it comes to education, we need to understand that every patient learns differently and what works for some will not work for others.

(00:48:33): There is an abundance of reputable information available from patient advocacy groups about chronic GVHD.

So, if we look at the barriers and the current standard of care, we can see that there are undoubtedly some gaps and unmet needs for our patients. So, what are the providers and researchers who have devoted their lives to transplant need to know? For providers and clinicians, it's important to know that there's an abundance of reputable education out there for your patients. Something as complex as transplant and chronic GVHD really requires a village in order to support patients, and leaning on these patient advocacy organizations for education and support will free up resources at the transplant center.

(00:49:11):  Research is needed to determine best method and times to deliver information about chronic GVHD to patients.

For researchers, it would be useful if we could better understand how and when patients need chronic GVHD education. We could develop studies that look more closely at the impact how and when we provide education to patients could have on their quality of life. And finally, for all of us who interact with patients and caregivers, we need to remember that repetition and over-communication is key. We're entrenched in the world of transplant and GVHD. It's second nature to us. Our patients and caregivers are in a foreign and scary world, learning something they didn't sign up to learn. In addition, the stress, fatigue, cognitive changes that they're experiencing, make it really hard to absorb information. So, we need to say things over and over and over and check for understanding.

(00:50:07):  National directory of chronic GVHD resources could help patients.

So, what else can we do? If we could wave a magic wand and change anything, one of our spells would focus on ensuring that patients have access to all the reputable information about chronic GVHD in one place. There would be a vetted national directory or support resources and education of support resources, and education, and even a patient nationwide guide or package within FACT accreditation. And because magic wands don't exist, although my 10 year old is hopefully waiting for his letter from Hogwarts, we put together a list of things that could be done in the next five years, including a thorough examination of the current landscape for providing support and education to patients. Who out there is using patient portals to share information? Where are patients getting most of their information and education? And what do patients really need? We should also work toward elevating the importance of patient education in the next five years.

 (00:51:09):  Peer support can be very valuable for patients with chronic GVHD

This is no easy task, and will take a multi-pronged approach. As discussed, there are many different barriers to good education and support for patients. And so, there will need to be varied solutions. Peer support is one of those solutions that's often overlooked. Meredith referenced it earlier. And while peer support is certainly not a substitute for medical care, patients want to hear and learn from other patients. So, this can be an important supplement to education provided by medical providers. And lastly, I want to encourage all of us to advocate for the needs that patients and families have in this area. Education and support are not off-shoots, nice to have aspects of healthcare. They are cornerstones to ensuring that patients can succeed in treatment, cope with difficult conditions like chronic GVHD, and live meaningful and fulfilling lives.

Katie Schoeppner (00:52:06):

And now we'll turn our attention to the topic of psychosocial and neurocognitive impact of chronic GVHD. Thank you.

Susan Stewart (00:52:19):

Thank you, Katie. I'm Sue Stewart and I'll give the presentation from our committee, which included Michelle Bishop, Meredith Cowden, and our medical advisor, Dan Wolff, all of whom contributed to this, and I appreciate their help on it. Next slide.

Helene Schoemans (00:52:38):

Are we going to do the Menti questions?

Susan Stewart (00:52:41):

I think the next slide is a Menti question.

Helen Schoemans (00:52:44):  Poll:  Do you experience problems with concentration, memory or attention in daily life?

That's right. So, that was one of the questions of the group. So asking people ... and we're asking here, only patients to answer this question. Do we have patients who want to share that they have issues with concentration, with memory, or attention in their daily life? If you are not a patient, please do not answer this question. This is really reserved for patients. Also not for caregivers. Okay. Wonderful. We're answering that. We have more patients on board than at the beginning. That's absolutely great. Okay. So, it looks like the results are mixed between people who are suffering from this somewhat or a lot, and a few who are mentioning that it's little, but no one has actually voted for zero, which is interesting.

(00:53:46): Poll:  How has chronic GVHD changed the way you see yourself?

Next question we have for you, and again, this is a question for patients only, please tell us how GVHD has changed how you see yourself. And we're asking you here to type a word. So, just a word, and then submit. You can put as many words as you want. You have three options. We're seeing a number of things coming up. It's okay if it takes a little bit time because you have to type in, but it's very informative for us to know how you feel. We really appreciate that you're taking the time to share this with us. We're seeing a very nice dichotomy between handicapped and normal. I think it's interesting. The size of the word refers to the number of times it has come up in the votes that people have volunteered. Very big thank you to the 15 people who have volunteered information here. Susan, I'll just turn it over to you.

Susan Stewart (00:55:12): 

Thank you. So, our group was charged with looking into the question of the impact of psychosocial problems on GVHD patients and survivors, and also whether cognitive challenges play a role in the well-being and quality of life of GVHD patients. And for those of you not familiar with the term cognitive challenges, that refers to changes in the way you think or process information after transplant, which a lot of people have talked about.

 (00:55:52):  Psychosocial challenges in transplant recipients

So, just looking at the psychosocial challenges, there was a literature review to see what people had studied and what people had reported in terms of some of the psychosocial challenges that transplant survivors in general face. And what they really found was that anywhere from 13 to 27% of patients do report severe depression; 14 to 27% report anxiety; currently three to 29% report fear that the disease is going to progress or relapse; up to 28% report post-traumatic stress syndrome, which I think all of the patients on this call can relate to.

 (00:56:37): Less than half of transplant recipients with anxiety or depression are being treated by medication or therapy by a mental health specialist.

And despite all of these problems, this particular report that is referenced here found that less than half of the patients, only 39%, were actually on any medication to help them manage the problem, and only 22%, less than a quarter of the patients, were actually benefiting from getting professional therapy to help with these problems.

(00:57:00):  70% of transplant recipients experience cognitive problems (learning, memory, attention)

So, some of the other challenges that were noted is that 70%, which is a high number, 70% of transplant survivors report neurocognitive problems after transplant. And that certainly affects quality of life. What's also reported is that 27 to 39% of graft versus host disease patients can't return to work due to health reasons, which obviously has a very significant impact on quality of life. And then patients with GVHD often report problems with self-esteem, poor body image because of the damage done to the body by GVHD. They report that relationships either with their loved ones or family or friends are altered as a result of the illness and treatment, and of course because of GVHD.

(00:57:54): Caregivers of transplant recipients also experience psychological stress.

So, it's not just the patient that's impacted by GVHD and by transplant. Family members, family caregivers in particular, are impacted too. And studies have found that caregiving in transplant survivors is really a long-term responsibility, particularly if you're caring for someone who has chronic GVHD. This one study reported that 68% of people who are caregivers of transplant patients, reported they are still caring for individuals six years after transplant, not the one or two that people tend to believe when they go into transplant. Of those, 20% reported a poor quality of life and greater depression and sleep problems than you see in the general population.

And a study that Dr. Bishop -one of the members of our committee - did looking at spouse caregivers who were an average of seven years after transplant, found that they had greater fatigue, cognitive problems, sleep and sexual problems, than their peers. They had less social support and more loneliness was reported then even in the transplant survivors themselves. Their odds of depression were three and a half times higher than their peers. And interestingly, but not surprising to me, is that they're less likely to get psychosocial health than the survivor. The caregivers are all about taking care of the patient and often don't take care of themselves.

(00:59:28):  Treatment of chronic GVHD requires a holistic approach.

So, this is a confusing slide, but I think it gets the point that we want to make, that the patient is more than just, as Katie said, a heartbeat or a functioning organ. A patient's quality of life is made up of a whole number of factors which are affected by transplant and GVHD. It's made up of how physically and how cognitively well they're doing. It's impacted by side effects of treatments, like steroids, that they're getting. It's impacted by the fact that after leaving the transplant center, they don't have the same kind of support from medical personnel that they had when they were going through transplant.

God knows they're all terribly fatigued during this whole process, dealing with depression, anxiety, and other mental health issues, and people who just really don't get it as to where they are psychologically and physically. Problems with body images, sexual functioning, family planning, dating, relationships, and role reversals- just changes in identity. The caregiver is now the patient and the patient and the person who used to be in charge and take care of things is now the patient and the caregiver's assuming roles that he or she didn't do before. And this all creates a very difficult situation for patients and caregivers and needs a holistic approach to treat.

 (01:00:59):  Psychosocial needs of GVHD patients and their caregivers are poorly understood.

So, when we looked at psychosocial needs, what we found is that the complex psychosocial needs of GVHD patients and the caregivers really are poorly understood and under-studied. And in studies that have been done, it was found that patients are likely to under-report symptoms of psychological distress, and providers are likely to under-assess patient's symptoms and patients' status of psychological health or stress.

(01:01:31):  There is disparity between how patients feel about their emotional health, and what clinicians perceive as the patient’s emotional status.

And there's great disparity, in studies that have been done, between what the patient perceives is their psychosocial well-being and what the provider perceives is the patient's psychosocial well-being. And this is often because there's not really a good conversation that takes place between the provider and the patient about this topic. You've got a 15 minute consult, you've got a list of things to address. This often is just ignored.

(01:02:01):  Psychosocial counseling for GVHD patients is not available at all transplant centers, and few community based therapists understand the complexities of chronic GVHD.

The problem is compounded by the fact that often psychosocial counseling at transplant centers really is not available once the patient leaves the center care. So, somebody leaving the center and being followed for their GVHD locally, is going to find that community-based psychosocial support with therapists who are familiar with transplant or with GVHD is really a rarity. And in fact, we're in the process of developing a directory of people like that who may be available to patients. But it's very difficult to find. And as a result, you have a lot of unmet mental health needs in this particular population, which translates into a poor quality of life, increased symptoms, decreased physical and social functioning, a sense of isolation, in many cases not adhering to the protocol set out to treat the GVHD, greater mortality, and for some patients an increased suicidal ideation. Next slide.

(01:03:06):  Mental health professionals and supportive care specialists such as physical, occupational and speech therapists should be integrated into the care given to GVHD patients.

So, what can be done to improve psychosocial health of patients and caregivers? Well, first, as I said earlier, we need to develop a holistic approach to treating patients with GVHD, which includes not just those specialists who can deal with the skin and the eyes and the mouth, etc., but mental health professionals, supportive care like occupational therapists, and advocacy organizations who can help with information and providing supportive resources during the treatment process. Some studies have found that developing fact sheets for patients, for caregivers, and for physicians on how to address depression and anxiety and neurocognitive issues has been helpful. And then integrating technology to help - apps, webinars, websites, etc., - where people can go to get some help, can also be quite helpful.

(01:04:02):  Research is needed into whether positive psychology constructs can improve quality of life for GVHD patients.

In terms of research, our team thought it would be important to include positive psychology constructs and research and intervention testing for things like whether gratitude, perseverance, resilience, optimism, hope, purpose in life, and meaning in life can improve the quality of life of patients. And bottom line, the trials used to study GVHD symptoms should look not just at the physical symptoms, but also at the psychosocial issues that the patients are dealing with.

Susan Stewart (01:04:42):  Neurocognitive problems before and after hematopoietic stem cell transplant.

I want to turn now to neurocognitive problems after transplant. And as I said, neurocognitive refers to the way we think and process information and retain information and learn. And this is a slide from a study that BMT InfoNet just did recently of 357 transplant survivors. And this particular slide looks just at the allogeneic transplant survivors that responded to the study, which is about two thirds of the study. And the orange bar that you see are the neurocognitive problems that the patients reported prior to transplant. And then the blue bars are the neurocognitive problems they said they had after transplant.

And so, you can see that very few people had issues with decision-making, multitasking, being easily distracted, processing information, word recall, organization, attention, memory, etc. before transplant. But after transplant, there was a huge number of patients who had difficulty with these problems, attention in particular, recalling words in conversations, multitasking, processing information once you hear it, and retaining information, particularly short- term memory.

And this is important because your inability to function well cognitively after transplant can affect things like your ability to manage GVHD medications and regimens proposed for you. Clearly, it has an impact on your quality of life. More than 50% of the patients said it affected their self-confidence, ability to function without reminders, et cetera. It increases the caregiver burden who now has to pick up the slack if the patient is not able to process and retain or remember information as in the past.

(01:06:36): Cognitive problems can persist more than three years after a stem cell transplant.

Contrary to what we often hear, that this will go away in several months or a year, 46% of the patients who responded to the survey said that they had been dealing with these cognitive problems for more than three years. So it's not necessarily a short term issue. Like the emotional and psychosocial problems, this is something that's not well discussed with healthcare professionals. Professionals often don't ask about neurocognitive problems, and patients often don't tell them. As a result, we have a problem that persists and is not resolved.

(01:07:18): Healthcare professionals often do not suggest strategies to alleviate cognitive problems in patients after stem cell transplant.

In this particular survey, when we asked if the healthcare professional had suggested remedies, less than 50% of patients who said that they had raised the issue with their healthcare professional said that the health care professional actually suggested remedies. Unclear why that is, but I think it's something that needs to be looked at.

Then just to note, there is at least a recent study that says GVHD itself, in addition to chemotherapy and all of the other issues that can go into neurocognitive problems, but GVHD itself, chronic GVHD itself, might, in fact, impair neurocognitive function. It did in mice. We'll see if it doesn't humans. Next slide.

(01:08:03): Patients should be referred to medical specialists who can help manage cognitive problems after transplant.

So what can we do to manage this? What sort of research should we be doing on neurocognitive issues and transplant survivors? First and foremost, I think for those who are complaining or feel they have an issue with cognitive functioning, they should inquire about a neuropsychological consult. A neuropsychologist can identify specific deficits, which will then dictate what the appropriate remedy would be. I think based on our survey, under- utilized are referrals to rehabilitation specialists. So speech therapists, for example, who can help with problems with word recall. Occupational therapists who can help with strategies for staying organized, retaining information.

 (01:08:50): Organization aids and environmental changes can help patients with neurocognitive problems after a stem cell transplant.

Organizational and technology aids, which were some of the things that physicians did recommend, but not very often. would include things like medication organizers, setting phone reminders, using calendars, using memory stations, which is where you put everything all in one place. Putting things back immediately after you're done, always in the same place.

Environmental changes can also help reduce cognitive problems, such as being easily distracted. So working in an environment without noise, using things like noise-canceling headphones could be things that could really help people deal with cognitive challenges that they're experiencing.

(01:09:29): The most effective, but under-recommended therapy to help patients with cognitive problems after transplant is exercise.

Then I think the probably most under-recommended therapy, but the most promising therapy for improving cognition, is physical exercise. It is very clearly known from the literature that physical exercise does promote nerve cell growth and blood supply to the brain, reduces inflammation, and is the single most important thing to improving brain health in general.

(01:09:55):  Patient advocacy groups have resources to help patients with cognitive problems after transplant.

There are also educational resources from patient advocacy groups that patients could be directed to and could access. So for example, on BMT InfoNet's website, we have two videos about cognition after transplant. One by Mike Parsons just this year and another by Margaret Booth Jones, which go through some of the therapies one might use in order to deal with it, and also some of the biology behind it.

(01:10:21): Clinical trials to assess whether therapies contribute to cognitive problems

Then within clinical trials, we do think that it's important that clinical trials identify contributing factors for neurocognitive impairment, and that we look very carefully at how to address these as a way for helping patients manage their life and their GVHD.

Christina Ferraro (01:10:48):

Hi I will be talking about survivorship and long-term care along with Chiara and Naomi, and our first slide will be be a Menti slide]. Where do you go for your GVHD follow up?

Helen Schoemans (01:11:11): Poll: Where do patients go for follow up care after transplant?

So again, this is a question just for patients. (silence). So we have many going back to their transplant team, it seems. Okay.

Helen Schoemans (01:11:42): Poll:  Where is the best place to get advice on GVHD management?

And then the next question we had for you was the following. Where is the best place to get advice on GVHD management? (silence). So again, this is something that is reserved for patients. Okay. Good. So feeling very responsible for you now. . Just give it two more seconds. Okay, great. So Chris, do you want to keep going with the presentation?

Christina Ferraro (01:12:34):  Providing appropriate care for stem cell transplant recipients is complicated.

Yeah. So we're going to go through some of the issues around survivorship and late effects and long-term care of transplant patients. These are unique and highly complex patients. They have risk of relapse. They have graft-versus-host disease. They have risk for infection, other cancers, late effects due to their chemotherapy or their immunosuppression, and fertility, mental health issues and quality of life things that come up that need to be evaluated and screened for.

There are many guidelines and recommendations out through ASTCT, the NMCP, ASCO and NCCN and NIH. All have similar guidelines and recommendations. But who's responsible? Who can, who should and who will monitor, order all the testing and treat late effects of transplant?

(01:13:32):  Survivorship care varies, depending on the transplant center.

So there are many other issues that can come up. Survivorship care clinics are not always in every center. Some also have different kinds depending on what they have available and what they can accommodate at their center. Mental health care is always difficult, not just for our GVHD patients, but patients in general. I don't think there are enough care providers out in either at the centers or in the community,

(01:14:02): Community oncologists and primary care physicians are often not knowledgeable about or set up to manage the long-term care needs of transplant recipients.

So what are some of the barriers? There are limited number of providers, either in the PCP or referring oncologists, who are knowledgeable about late effects, specifically associated with transplant and GVHD. How many specialists do you have access to? If you have a patient who has GVHD of the lungs, do you have a pulmonologist that you like and can handle the patient? Who will define what responsibilities go with which provider? How can patients be sure that they are getting all of the testing and screening that is required and recommend them? Do you have enough ancillary services? Do you have administrative services? People need to be able to schedule these patients. Do you have the ability to start a clinic specifically for GVHD patients within your center? Or do we have that availability in the region, or at home?

Patients often go very far distances to get to their transplant center. So that can be very difficult to get back to their transplant center for long-term follow-up care or GVHD care. And then what are the supports for caregivers?

(01:15:27): Follow up care programs for transplant recipients should be a team approach, incorporating not just physicians, but mental health professionals and other specialists as well.

So, our current standards of care actually are very different depending on where you go. There are specific recommendations that you can look up on various resources. Different survivorship care models, depends on where you are. At the Cleveland Clinic we have an example of an integrated and consultative service. We established standards within our program guidelines for screening and treatment of certain late effects and transplant.

The Fred Hutch LTFU clinic is an example of a transitional service. They also use telehealth and telemedicine, which is very vastly important for their patient population, as they have patients from outside of their state, and sometimes very far outside of their state. It is important to establish a program that fits into your current plan, and is accessible and impacts the patients. It should be a team approach using not just your APP physicians, but also your PharmD social workers, nurses, psychiatrists, psychologists. All patients should have a summary and care plan provided to them, which reviews all of their past and current treatment, and establishes a plan for their surveillance and monitoring for late effects.

We do have standard GVHD assessments, which helps keep at least, to some extent some, consistency through different providers. I'm going to pass it off on to Naomi now. She will give you a patient perspective.

Naomi Pineda (01:17:11): Personal story: mental health is an unmet need for many GVHD patients.

Due to the rarity that is chronic GVHD, varying degrees of severity, and overall difficulty in treating, there are many gaps and unmet needs that patients are faced with. Mental health was something that I personally, despite having gone through AML twice by the age of 13, had not really struggled with until I started to be affected by chronic GVHD. Depression, anxiety, PTSD and grief are all things that began to affect me because of my GVHD, and to this day are things that I still struggle with.

(01:17:56):  Healthcare professionals need to create a welcoming environment that encourage patients to discuss concerns, opinions and symptoms.

Care providers outside of the hospital should be comfortable with survivors and their possible struggles. Not all patients live within safe or comfortable distance of their hospital anytime they get a fever or have some kind of GVHD related issue. In turn outside [healthcare] caregivers should be educated as such. Equally as important, caregivers need to make sure that they are able to create the environment needed in order to establish good relationships with their patients. Because when patients know and feel that they are not only a place of trust, but also feel supported and seen by their caregivers, they are more inclined to voice their concerns, opinions, symptoms, etc.

As mentioned before, mental health is a huge issue for GVHD patients, and in turn proves the need for offered support, not only during transplant and treatment, but especially prior to and post. Being alive is obviously nice, but at the cost of which it comes, it can be extremely mentally tolling.

(01:19:19):  Financial assistance is important for many GVHD patients.

Financial assistance is another big thing that can prove beneficial to patients who may very well be taking a dozen different medications, needing wound care supplies, or mobility aids, et cetera, and may be unable to work due to their condition. Or even if they are able to, meds and such are not always covered and can be quite expensive.

(01:19:44): Pain affects a patient’s mental health but is sometimes not adequately addressed.

Side effect management, especially in terms of pain, is an issue that is prevalent and needs to be improved upon. Chronic neuropathic pain may well be one of the biggest influences on a patient's quality of life and their mental health.

Finally, improving GVHD treatments and their effectiveness in dealing with the patient's symptoms is integral in moving forward and improving patient's quality of life and the struggle that is living with chronic GVHD. Thank you for your time.

Helen Schoemans (01:20:21):  Poll: How does GVHD affect patients?

Thanks a lot. That was really beautiful, Naomi. Thank you very much. So just before we move into the free question and answer, in a moment, we'd like to ask you to help us again to put a few priorities together as to how to move forward. To do so we'd like you to answer this first question, how does GVHD affect patients? You can answer this through the Menti. Tell us whether you feel like it affects patients very little or very much at the level of the body, mind, the social level or at the financial level. We'd really appreciate if everyone tries to vote here. This is not reserved for patients. This is for anyone who wants to react.

So please feel free to submit your answers. You do not need to be a patient to reply. You can be a caregiver. You can be a healthcare provider and share your experience too. This is a broad group. We're going to keep going. We have enough time to get as many answers as we can. It looks like body is most effected, followed by the psychological state of people, tying up with financial issues. Because there's 57 of us voting now, obviously it's not just patients answering.

(01:22:24):  Poll: How do you feel GVHD affects caregivers?

Good. Well, thank you very much for sharing that with us. Now let's shift gears a little bit and let's try to see how you feel that GVHD affects caregivers. So it's the same question, and you can answer how you feel that GVHD is affecting people who are taking care. We're not talking about healthcare providers. We're talking about informal caregivers. Those who take care of patients day in, day out at home. Yes, please.

Once you’ve voted, you can just submit. So the group seems to feel like caregivers are essentially affected at the emotional level. Okay. Thank you very much for volunteering your thoughts about this.

(01:23:43):  Poll:  What are the priorities for improving GVHD care?

That gets us to the next question, being if we want to improve GVHD care, how should we do this? So here, we're asking you to put priorities. So if it is not a priority, you can leave it on zero. If it is a top priority, give it a five. Try not to give everything a five because otherwise we're not going to be able to identify priorities. Try to take your first priority, giving it a five. Second priority, giving it a four, for example. Just to try to see what is most important to you. Again, you do not need to be a patient to answer this question. This is a broad, open question to the community. Then once you're done, please press on submit because otherwise we can't see your answers. We're not seeing any patterns here as far as priorities are concerned. So I guess everything feels more or less just as important. It's interesting. I must admit, I was expecting see one theme coming out. Good.

(01:25:20):  Poll: What are two words to describe what you think is the worst part about GVHD?

Then the next question is a word cloud. Here again, everyone can answer, this is a general question. Please volunteer two words as to what you think is the worst about GVHD. This is going to create a word cloud. Okay. So we're seeing here pain being quite crucial. The impact on quality of life. Most people are voting. That's really good. Thank you very much. Almost done with this voting thing. And then you'll be able to talk and do this on the more reiterative way. We're still seeing pain being really crucial here. Suffering, disability. So I think the the majority of us are not patients. I think it shows that our field is sensitive to the fact that this is a disastrous disease.

(01:26:52):  Poll:  Is there anything positive about GVHD?

Then let's look at it the other way. This was a suggestion that we had from patients. Is there anything positive about GVHD? Can you think of anything that could be positive about GVHD? Okay. So I guess everyone is... And that is always the big challenge I find with this disease is the fact that we are always trying to strike that balance between GVL and GVD, trying to get rid of the initial disease, but at the same time not making people sick or disabled. I'm seeing a few positive words out there, hope, resilience, changing perspectives. I think there's a lot for us to know and to learn about those types of aspects. As was suggested by the previous speakers, maybe we should just like in the burnout therapy, we could also try to think about increasing resilience instead of decreasing depression. So thanks for volunteering.

(01:28:28):  Poll:  Is there anything important that we missed discussing today?

This brings me to our last polling question, which is, is there anything you feel that we have missed today? So we were not expecting you to shoot and tell us directly what you think we might have missed. You may, because there's going to be an open session after this. This is the last question. But you can also just type in a very anonymous way and let us know. Is there anything that you feel that this conference or that this last part of the conference has forgotten? Is there anything that you feel should be added to the way that we're approaching it right now? Positive comments are always good for resilience, but you may be critical and you can write an essay if you want. You have plenty of time to write whatever you want to add here.

(01:29:29):  Volunteer to be part of a GVHD advocacy database.

I'd like to take this opportunity as well, just to remind you that we really want to build a wider platform of stakeholders to better understand the side that patients are living through. This requires that we have a number of stakeholders in a database, which we can reach out to when we want to do these type of initiatives. When we want to try to better understand how patients feel with GVHD. So it's really crucial if you have the time, to volunteer to help us with this by sending us an email and coming into our database. So we can reach out to you when we have projects, when we have offers for education or stuff like that. So I think it really has to be a two way street. We're there for you and would really appreciate to have sometimes some direct feedback from the people for whom we are working on the healthcare sector.

So, you can actually keep putting in comments anytime you want. I'm going to stop sharing the screen so we can go to a live discussion.

Meredith Cowden (01:30:59):

One of the things that I was thinking of is I wonder if some of the questions that were... Some of the things that were brought up in here, if maybe there's some things that we could potentially try to address.

Helen Schoemans (01:31:13):  Sexual health of GVHD patients has not been addressed at this summit.

Of course. Sure. So let me just go back to the beginning. So sexual function is something that has not been directly discussed as a highly morbid form. And this is maybe something that I'd like to go back to the patients who are here, and if they want to react on this, and maybe Meredith, if you want to say something about this. We had this discussion about whether this was to be considered as a highly morbid problem or not. Obviously as healthcare providers, we're not very well placed to decide whether it is highly morbid, like a lung form of GVHD, which might get you on oxygen, or jeopardize your life, or is it highly morbid like people who have diarrhea all the time. Are there people in the panel who want to react on this?

Susan Stewart (01:32:12):

I could speak to this. I know we get a lot of calls, we've got a lot of correspondence from people who do have GVHD in the vagina, and it's a huge problem. It can be a mild case, can also be quite serious and quite painful. So I have to agree. I'm surprised that that was not a bigger focus of some of the earlier sessions or even this session, because it certainly does impact quality of life for a lot of patients. Is probably under-reported both for males, but especially for females.

Daniel Wolff (01:32:57):

I can respond because I was in part in charge of the highly morbid form. We left it out for space reasons, but that's probably not a very good idea, and take the methods or we take the methods of community that we need to work on a topic that's in the task force to provide a roadmap, how to improve this issue and to bring it more to attention.

Susan Stewart (01:33:25):

I think it's another one of those 'don't ask don't tell' kind of things where it's out there in the community much more prevalently than clinicians think of because it's not necessarily raised.

Daniel Wolff (01:33:37):


Helen Schoemans (01:33:39):

I'd like to add something to that, because we have done a survey in patients at the EBMT asking them what the top priorities are for general survivorship after transplant. And interestingly sexuality is not in the top three. The top three we had, and this is inside information because it's not published yet, but it was physical function and psychological functioning and general quality of life. But I was very surprised to see that other stuff like sexual function and resilience did not get a lot of patient answers.

Helen Schoemans (01:34:24):

You know what I mean? It's difficult to know why, but it wasn't in the top three, at least.

Kirk Schultz (01:34:36): 

One of the surprises to me, I've heard a lot about fatigue before, and I've always known pain is, but the pain and neuropathy is something that's really I think more prevalent at least in the group survey today than maybe is recognized.

Meredith Cowden (01:34:57):  Fatigue is a major issue for transplant recipients.

I know that, what is it, coming up, Peggy, you're having a lunch and learn, right? Focused primarily on fatigue, I believe, right?

Peggy Burkhard (01:35:13):

It's December 2nd, and we're asking folks to submit their best tips and then we're going to compile them all and make it a little bit of a different format for us. We're going to share the best tips, and then we're going to have a transplant nurse from Karmanos, Stacy Prieur is going to deliver a 10 minute professional segment, but there's going to be a lot of time for sharing. So if anyone's interested, they can visit our website BMTlink.org, for a free registration.

Susan Stewart (01:35:44):  Transplant related fatigue is now well addressed by doctors, and contributes to depression, anxiety, cognitive function and quality of life.  

I will say one of the things that BMT InfoNet does each year is the Celebrating a Second Chance at Life Survivorship Symposium. And this year we virtually had over 800 people attending it. Without question, the most heavily attended sessions were the fatigue sessions. They're recorded on our website as well, but we had one on using exercise to build stamina, strength and reduce fatigue, which was really well attended. The video afterwards was well watched. And just the general discussion by Dr. Ken Miller about fatigue after transplant, again was the top, if not second, in terms of the one that was most often watched. So it wasn't mentioned in these little word bulletins, but it really is a major issue and a major concern. It contributes to all of the things we talked about. If you're fatigued, your emotional health is not going to be great. Your cognitive functioning is not going to be great. Your quality of life is going to be in the toilet.

So it really is, I think, under-recognized and under-addressed. Again, in Dr. Ken Miller's presentation, he referenced studies about whether physicians asked about fatigue or not. And again, the study that we did on the cognitive problems, it's often not asked about and often not addressed. One of the reasons given in the survey that he referenced was that physicians aren't really quite sure what to do about it, which is not a good reason to not ask about it and at least refer to those who do know something about how to manage it.

Meredith Cowden (01:37:26):

Hey, Daniel. I see a couple of raised hands, you're moving into your question and your discussion time.

Daniel Woff (01:37:32): Need multidisciplinary care for GVHD patients, but also need to avoid overkill in sending patients to specialists.

Yeah. I just wanted to bring up one question, and it comes together. It's from an ophthalmologist, Katie Liu, who brought up several issues. One thing is we need a multidisciplinary approach, but we may create sometimes an overkill sending patients from one specialist to another. She reminded us to find ways not to create that overkill. I think that's a challenge, to find the right balance.

She also mentioned that even pain is not addressed in a physician or a patient interaction. Patients with eye disease. ocular graft-versus-host disease, often suffer from intense pain that remains unaddressed. So pain is still an issue to be added on the list. Neuropathic pain or pain through other causes. We know from quality of life studies that this pain kills quality of life, that's one of the worst things you have, clearly something to be worked on.

Kirk Schultz (01:38:59): Educating physicians who are not transplant GVHD physicians about caring for GVHD patients needs to be improve.

One of the other things that I'm hearing as we're... just to fill the space, but is this issue around knowledge transfer to positions that are not transplant GVH physicians, and how we get that information out there to facilitate the interactions with, even if the patient is possible, we still need the other knowledge transfer as well it sounds like.

Meredith Cowden (01:39:55):

Yeah. It does seem like that's something that was not only just today, but was discussed earlier too as well. And so what's the best way to disseminate information in order to expand the communication among everybody basically.

Steve Pavletic (01:40:33):  Regional GVHD multidisciplinary clinics should be explored to improve quality of care for GVHD patients.

If I can make a comment to you now, it was mentioned in Sue Stewart's presentation and I agree to that on three points. But the idea of regional multidisciplinary clinics with expertise, I think it's a very good one. It's been there as a need for some time around. And it just says we all do a great job, but still do the back and forth communication to the patients and community. It's just not doing great. So maybe give them some statement from here and appeal how do we better this.

In this day and age, everybody can get allogeneic transplant, they live longer, they're in the communities. We have telehealth available. Something should be done for a regional sense of so-called quality. Define, maybe, the reimbursement issues. So some payers maybe involve accreditation. If there's some call to action in that aspect. Because another thing is it seems that [we have] lots of resources at our end, but we're just not putting it together in the most optimal way.

Kirk Schultz (01:42:01):

And Alex, can you also move up Katherine Spence? I think she had a comment as well. Is she not on? All right. It looks like it's happening now.

Cathy Spence (01:42:33):  Primary care doctors seldom see a GVHD patient and need education on how to handle them.

Hello. Sorry. Hi, it's Kathy Spence. I just think this is a great session. Really appreciate you having it, but I want to make a couple of comments and just ask how we can move on from here. Meredith had talked about doing some sort of information dissemination for family doctors and as well for caregivers. I'm a patient, but I'm also a family doctor. And I know in my 35 years of work that I never saw a transplant patient either solid organ or stem cells. So to have some sort of a booklet or internet space to go where you could have validated information including what treatment the patient has had, have they progressed, tell them a bit about what GvHD is and how to interpret signs and symptoms that the patient might come into the regular doctor with, how to handle infections and fevers, that kind of thing, recommendations for immunizations, bone marrow or bone density testing, that kind of thing.

And discuss re-monitoring for secondary cancers and of new changes, that kind of thing. And maybe even briefly talk a little about some of the more common medications that are used, including side effects like prednisone, rituximab,, that kind of thing. And also maybe doing similar documents for family and caregivers in more layman's terms. And also for both cases make recommendations for follow-up saying, you need your first PFT at so many months post transplant. And I'm also wondering whether... I know with PFTs, certainly I think most transplant centers send you for PFTs pre-symptoms. But I'm just wondering whether it might also not be a good practice to send patients routinely post PFT to an ophthalmologist who has an interest and understanding of the condition to a gynecologist, to a dermatologist and to a dentist.

Because I think these are some of the primary specialists that we need to see, but that don't know much about the condition. And again, we don't know ourselves because if you're starting to have dry eye and you get some increased discharge, that kind of thing, you might just think it's allergies. But if you went to somebody well versed in GvHD of the eye, they could start treating them much earlier and hopefully impact the condition. Same thing with gynecology. I mean, you might not know that you can just... And a lot of times patients might think it's just related to their transplant or dermatology. Oh gosh, even me, I thought I was just getting cellulite until finally somebody took a look and said, "No, it's GvHD." So I just think it'd be really great also to have a multiple disciplinary clinic.

That's my dream where maybe once a month or twice a month, you could have specialists who are interested in all these different organs that are affected by  GvHD. And either in person or now that we're much more comfortable I think in general with telehealth, do it by telehealth. I know it's not ideal, but better than nothing. And there is such a dearth. I'm in Canada, in Ontario, and it just seems you don't have any great specialists. Ask my BMT clinic to see a dermatologist and they'd say, no, they don't know anybody. Just go find my own kind of thing. So really important if you could do something like that. And I would be certainly happy to join any kind of a task force in trying to implement some of the information for the doctors, for the family. Any other centers already have this sort of set out or done. I mean, to share the information, to share the tools would be just a wonderful way to proceed. And I have one other question. If I-

Kirk Schultz (01:46:43):

Okay. Thanks a lot. We're just trying to move on a little bit there. Just one more question?

Kathy Spence (01:46:48):

Yeah. I'm just wondering. Sue Stewart, I believe, talked about the preference or the decreased risk of GvHD with bone marrow, as opposed to peripheral blood stem cells, although, I believe that with bone marrow that it might take a little bit longer to graft. But I'm wondering if she had or anybody there had any papers to support this? Because we're also looking at maybe trying to see whether the Canadian Blood Services, when they counsel people about donations, that perhaps nearly starting to …

Kirk Schultz (01:47:24):

Katherine, I'll tell you what. Let's you go ahead and talk to me about that in Canada. I'll work with you on that, okay? So I think we can work on that as a Canadian issue. I do want to give some time to Carrie Kitko though, please. You're the next one I think on the list, Carrie. Go ahead.

Carrie Kitko (01:47:42): How to normalize seeking help for emotional help, when living with GVHD.

Great. I just wondered if some of the patients might be able to comment on normalization of seeking help for the emotional mental issues. I think there are always some patients that are on board with that. But in my own chronic GvHD clinic, it's a lot of pushback from patients where clearly they have chronic GvHD. There's physical things that we should be doing to help care for them, but when we try to refer to a psychologist, for example, to maybe talk about some of their struggles, they just don't want to see one more person.

Susan Stewart (01:48:21):

I can maybe jump in on that. I know I come from a family and we were raised that you just tough it out. You got a problem, you tough it out. You deal with it. You don't go running off to a psychologist. And, I think there's a group of people that probably were raised in a similar way. But I think that normalizing it is important. And one of the ways to normalize it frankly, is to use peer support. We have a peer support program with over 1000 volunteers in it where people, including caregivers, can reach out and talk to someone else who has been through the situation that the patient or the caregiver is in.

And often in the context of those discussions, when they're finding that other people found that using mental health resources was helpful, really does kind of turn the tide and people are more interested in perhaps pursuing them themselves.

I think a lot of times the sense is that this is just one more thing I can't do for myself. And it really makes me mad that I can't do it. And, understanding that this is a totally expected part of the recovery process and is totally normal and totally good because it's going to help them better take care of their own physical health, may be a way to posit it to them.

Katie Schoeppner (01:49:51):

And Sue, this is Katie Schoeppner. I just wanted to add one other thing, that I echo much of what you are saying. And I do think there's a lot of stigma around mental health for many people. I also think our BMT patients often feel like if they're going to go to a therapist in the community, they're going to spend a lot of time trying to explain this highly complex treatment and condition that they're dealing with. And it gets frustrating and they don't feel seen or heard in the way that they want to. And one of the ways we're trying to help with that is Be The Match is offering free counseling by licensed social workers that's provided over the phone. And, we've gotten good feedback from our patients and caregivers who've used it because our practitioners, our social workers understand BMT. GVHD is no mystery to them. They know what it is and how it impacts people's functioning, and they'll help. And the fact that it's offered over the phone is also appealing because people can do their sessions from anywhere. Lying in their bed if they're tired, in the waiting room at the clinic, if they've got other appointments. So, it really helps in terms of flexibility, and it's free. We don't take insurance. It's just a free service. So for people who don't have access to insurance or live in an area where there's not a therapist it's a good option.

Susan Stewart (01:51:14):

Mm-hmm (affirmative) And just to add on to that. I just want to let you know that we're in the process, BMT InfoNet is in the process of developing a directory of community-based mental health professionals who have experience either with autologous or allogeneic transplant, GvHD, or CAR-T cell therapy. And that will be available sometime next year. We're just in the process of reaching out to potential people to include in it. There's not going to be a huge number because you're right, there's not a lot of people trained in this. But there are definitely people in the community that folks can go to either through telehealth or in person.

Kirk Schultz (01:51:56):

Was there another comment?

Nosha Farhadfar (01:52:03): Educate health care providers in training about long-term complications of cancer, physical and psychological, so that they can provide better care for their patients.

Yes, it's Nosha. I wanted to make a comment about another topic. This topic of improving the education of healthcare providers, which I think in turn helps a healthcare provider better support and educate the patients. So I wonder if we need to focus also on healthcare providers in training, like fellows and residents. There is very little education, if any, that focuses on long-term complication of cancer therapy, transplant, even physical complication, let alone the psychosocial complications. So a lot of, even my colleagues took BMT fellowship, which is a one year fellowship, and we haven't had any training on psychosocial complication of transplant. And for me, the first time I saw NIH chronic GvHD criteria was when I did an elective one month in Fred Hutchinson. And it was a couple of years ago. So if you're not trained, we are not going to use it routinely in our practice. So I think that's one aspect that we need to focus on, better training our healthcare providers in training. This way they can incorporate while using routine clinical practice.

Daniel Wolff (01:53:30):  Accrediting agencies like FACT/JACIE should make having a program to address long-term problems after transplant a “must” for accreditation.

Yep. Can I make a short comment on that? Thank you very much for raising that point. I think we as transplant communities focus too much on early survival. And if you look at structures at the transplant centers, we have kind of an uneven accreditation process. The FACT/JACIE process not completely ignores, but focuses much more on early transplant cost than on late. That's [late transplant issues] is not a “nice to have”, and we should make it through that. That should be one of our initiatives. So it should be made to a “must [have program]’. Graft-versus-host disease is physician created, made by the procedure. And we need to care for that, among our long-term complications. But that's a statement, which could also come from the patient community. So you create that problem, just don't leave us alone on that.

Meredith Cowden (01:54:35):

Yeah. Well, I do think that that's a really good point and I wonder if there's a way to, because you know early transplant is very different from the things that happen later on, and when you're more in the survivorship phase and you're years out. And especially for the younger transplant recipients. There's a whole lot, like what was discussed, I think earlier, yesterday maybe it was, they have a whole lot of life ahead of them and moving through the developmental stages and what that means for them mentally, emotionally, socially, work, all of those kinds of things. So I think that's really important.

Steve Pavletic (01:55:26):  Lifestyle medicine is new and may help us improve care for GVHD patients.

I have to reflect on this stunning information that you present. Again, from perspective, for reasons just mentioned, that Sue Stewart mentioned 70% of neurocognitive dysfunction. I mean, it's something that we wouldn’t expect and its only one of the top concerns. It goes back to how much are we to educated to change everything. Dr. Schoemans mentioned something called resilience, and I liked the point because there's lots of stuff that we as a medical community should be trying. And there's so much room for improvement that we can do a better job., But assuming this aspect of 'what can I do for myself?' and that nobody's teaching us how to convey that message.

There's a whole area of medicine growing - it's called lifestyle medicine -modifications that focus on exercise, nutrition, sleep, or relaxation - things that we are really not very good at advising on - that goes into progress the patient [is making] as well. So education of the medical professionals, empowering patients, these are great points.

Meredith Cowden (01:56:39):  Healthcare professionals always need to ask patients about their mental health, not assume it is fine.

Thank you. We have just a few more minutes, but I'm not sure if Michelle Bishop has anything she wants to add to that. But one thing that I've found, just in my own experience, is that sometimes whether it's the physician or the nurse or the tech who's checking me in, or doing whatever, sometimes depending on what I look like, they either decide to ask the - because there is a depression questions, the anxiety questions, and all of that. And I have had an experience where a person who is checking me in looked at me and was training someone and said, "Oh, sometimes we ask the depression questions, but we don't need to with her." And then moved on.

And so, I think that then is translated over to the physician who believes that there's no problem, but it wasn't even addressed. And so, I think really communicating that with everybody who is involved in the follow-up process and the meetings with the patients, I think it's very important to include that.

 (01:57:58):  There needs to be a greater comfort level among physicians to ask patients questions about sexual function, mental health, neurocognitive ability and other sensitive questions.

And too, I think, and then I'm going to stop talking because I'll go on forever. But, I also think that creating a level of comfort, and I could be making an assumption here, but creating a level of comfort within the medical professionals around addressing mental health, neurocognitive ability, all of those things. Because they don't know how comfortable everybody is in asking these kinds of questions, kind of like the sexual functioning question. I don't know how comfortable everybody is with that. And so, how can we create more... an ease of discussion, I guess, in terms of that. It's just something. And I don't know. Michelle, do you want to add anything?

Michelle Bishop (01:58:45):  Mental health can quality of life are on a continuum after transplant, and patient status and needs can differ over time.

I mean, just really excellent point. And, I think what folks are touching on is that the mental health and the quality of life issues are really on a continuum. And that we do still struggle with the stigma of mental health, but as a practicing private practice psycho-oncologist, a lot of what I try to give some education with patients and families up front is I see it a little differently rather than psychopathology rather kind of normal people going through abnormal circumstances. And yes, it's normal to have your quality of life impacted and your mental health impacted. That doesn't mean we don't want to treat it. Just like if it's normal if you have nausea with chemotherapy, we would never think of not treating it. But it's a sort of a different approach. It's more that holistic approach and team approach.

Michelle Bishop (01:59:41):  Transplant teams have an opportunity to normalize mental health services that can improve patient quality of life.

Then I think all these comments are so excellent in terms of, we can start so much earlier. We can start with the training of the healthcare practitioners and helping them understand and be thinking about this. And then of course educating the transplant team and the patients and caregivers. I think the transplant team has an opportunity to normalize it and to talk about these issues in the broader realm of quality of life.

It's not to say that patients don't also sometimes have significant mental health, like psychiatric issues. They may have major depression or post-traumatic stress disorder that needs to be treated, but I see it as on a continuum. And I think Meredith, you bring up an excellent point that trying to figure out ways to ask everybody and not assume, especially when it comes to things like mental health, because we can't see whether or not someone is suffering internally. And we might make assumptions that, oh, they're fine. Or, with Meredith and I, we're both therapists. And so they might say, well, she's a therapist, so she's fine. Well, we get depressed too. So, I just think there's some really, really excellent points that are being brought up and lots that we can do to try to address those.

Susan Stewart (02:01:11):  Normalize the use of mental health services throughout the transplant process, stressing that transplant is an extraordinary problem that may require new tools to manage.

Great. If I can just add one other comment. I think preemptively telling patients, it's very common for people to have distress during and after transplant. And this can go on for a long period of time. And it's very common to need some additional help, that you wouldn't normally need in your daily life, to help you get through this.

What I tell patients often on the phone is this is not another fender bender in life. This is not a broken knee that's going to recover quickly. It's a stressor that's much more serious than that. And so you need different tools to deal with this than you would use to deal with those normal stressors in your life. And if you can normalize it that way, and prepare them in advance that they may need this, and reiterate it as just a real common thing along the path, I think it makes it more palatable to people to consider, once they really need it.

Meredith Cowden (02:02:06):

Mm-hmm (affirmative) Yeah. Great. So we're at a couple of minutes after 3:00, but I think we're going to wrap it up. One thing that I want to say though is that I got a message that this email address may not be accessible to everyone. Has that been an issue that anyone has heard of before?

So if it's not working, then we'll make sure that you have access to one that does.

So thank you, everybody. I think I'm going to wrap it up and then I think you're going to... You made some notes, Kirk, right?

Kirk Schultz (02:03:42):

Yeah, I gave a brief summary, but you take us through with this. You've got some stuff there.

Meredith Cowden (02:03:46):

Okay. Well, I just wanted to say thank you. I wanted to say thank you so much to the committee for all of their hard work and effort and energy and everything that went into this. I think you did an amazing job. And I would also like to give very, very special thanks to Daniel Wolff, who's my co-chair on this. He was so helpful when I wasn't thinking about it, and then especially also Steven Pavletic, Kirk Schultz, and Helen Schoemans for helping us in guiding the process, helping us with the papers and just your overall support and enthusiasm - I think one of the biggest things that definitely helped me. So thank you, thank you so much. And I would also really like to thank the consensus steering committee, the working group, everyone who participated in this, and most importantly, I want to thank the audience and the participants, whether you're a patient, a caregiver, a provider, a researcher, or somebody from industry. Whoever you are, whatever your role may happen to be, thank you for being part of this and helping to move this conversation forward.

I think that there are a lot of really exciting things that will come out of this. Hopefully we've given you some really good information and opportunities to support you with your own process, whatever your role in the process is. And I just want to say again, please consider joining the international GVHD Patient and Caregiver Network by send... This is just my email address. So, I'll just hold onto it. So if you just want to send a quick note and just say, I'd like to be a part of this, that's great. And then we'll put you in the list and we'll go from there. So I think that's all I have. Thank you.

Kirk Schultz (02:05:31):

Do you have a few slides, just some resources or something, Meredith?

Meredith Cowden (02:05:37):

Oh, that's right. Yeah, I'm sorry. Yep. So at following all of this, there's several pages of resources. So we have resources that are specific to the website information for the people who were on the committee, as well as additional websites that work for you. There's also information about books, and BMT InfoNet is offering a free book if anyone is interested in that. And then there are several pages dedicated to videos, podcasts, and webinars. There's also emotional support for GVHD patients and family members.

And then I wanted to add just a little section for the adolescent, young adult population, because they are their own. Right? And it's something that we didn't necessarily touch on a whole lot today, which I think is something to consider for the future. And then there's a discussion for clinical trials and financial assistance and fundraising. So all of that is on the website and all of that will be made available to you if you are interested or if you need it. If you have any questions, just let us know. Okay, now I'm done. Thank you.

Kirk Schultz (02:06:49):

Okay. And just to do a brief summary of an amazing, amazing session, I just want to before, because I forgot at the beginning. I actually was co-chairing this with Stephanie Lee, who has just been absolutely a rock in this whole process. And she did have to go off to... As she's president of ASH as well. And so, she had to go off with some materials around that. But anyway, just in summary, amazing session. Working Group 1 talked about, and I hope you're not hearing this jackhammer, which just decided to start as I'm talking, that the outcomes in trials really need to take quality of life into consideration. And I think that's come up as a recurring theme. The other one, the critique on Working Group 2, was trying to get patient input into design and feasibility of clinical trials is really, really needed and necessary. And also, then the issue came up around, it would be great if we have a single place where people can go to, both healthcare workers as well as for patients to get information as a central place. The other things that came up, I think were in trial design. We should work on better incentives for patients and discussions around how many samples, how many assays, how many evaluations are being done. And that many times a trial is too ambitious in what it's asking of patients to do, and kind of the clinical trial fatigue.

And let's see. This is back to, yeah, trying to get things in one place. And, just the issues. It was interesting around neurocognitive about how really, there’s just not a lot of information, poorly studied, and we need to do a lot more about that. And we need better strategies for patients to try and for both healthcare workers or for patients. The issues around mental health and financial assistance and trying to deal with this multi-systemic disease is, in the long-term survivorship issues, is something that Naomi brought up. And then I found the word cloud totally fascinating with pain being one of the biggest things to come up. Obviously, quality of life, disability, uncertainty, depression, but the pain was really big today in the group. And, this issue around the hope that there is GVL and that's why it's kind of a good thing, bad thing.

And then just in the midsection, a couple of things I picked up on was one is maybe we don't talk about GVHD as kind of almost a journey and that there's various aspects, and various parts of the disease process that people are going through, and it needs to be maybe a bit more recognized. And the practical approaches are needed in that. And I think that kind of summarizes it. Did I miss anything, Meredith? Did you think of something that needs to be emphasized?

Meredith Cowden (02:09:48):

No, I don't think so. I think that was perfect.

Kirk Schultz (02:09:50):

Okay. Steve, you get to have the last word on wishing everyone well.

Steve Pavletic (02:09:56):

That's exactly what I'm going to do. I wish you all well and thank you for fantastic input on the these days that's going to keep moving us forward in the years and months to come with much more clarity. I appreciate very much. And this was the... I couldn't have imagined a better day than the end of this conference and the patient advocacy summit. Thank you so much for everybody who put your work and hearts and quality into preparing this. Have a wonderful weekend.


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