Your Personal Survivorship Plan: What, Why and How?

Transplant survivors need a personal survivor care plan that details their health risks and appropriate treatment long-term.

Presenter:  Linda Burns MD, Vice-Preside and Medical Director of the Medical Services Department at the National Marrow Donor Program/Be The Match and Senior Scientific Director of the Health Services Research Program of the Center for International Blood and Marrow Transplant Research

This video is a recording of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium, Orlando FL

Presentation is 42 minutes, followed by 18 minutes of Q&A


By the year 2030, there will be an estimated 500,000 stem cell transplant survivors dealing with a variety of health issue after transplant. Each survivor needs a personalized survivorship healthcare plan so that they and all healthcare professionals involved in their care understand their medical history and the potential health issues they may face long-term as a result of their transplant.


  • Building on national efforts to require survivorship care plans for cancer patients, transplant programs are being urged to create personal survivorship care plans for each stem cell transplant survivor
  • A personal survivorship care plan can enhance coordination of care long-term among all members of a survivors’ health care team
  • If a transplant survivor, today, does not have a personalized survivorship care plan, he or she should ask the transplant center for one

Transcript of Presentation:

00:00  Background about speaker:  As I said, I just love survivors. I got into the field of survivorship when I was a lymphoma/leukemia specialist at the University of Minnesota. I did my first transplant in 1984, so I've been around. I have a good colorist, I have a little hair still. I took over, assumed the care of a patient whose physician had retired, and she was around 21, 22. I had just seen her once and she was back at work.

She was a couple of years out and seemed to be doing well. Had been married over the past year, was excited about life again. She came in holding her side. I saw her, you know how you see patients come into clinic, you learn a lot just by observing, you probably have known that. You can tell where someone's feeling well or they're having a tough day, things aren't going well.

I said, this is not her real name, "Joan, what's wrong? She said, "I don't know." She says, "I think maybe I broke my ribs." She was a young woman, I thought oh, has she been at soccer or what happened? She'd rolled over in bed, so she has such horrible osteoporosis and she had been on steroids for graft-versus-host disease. I thought, "My gosh, we're helping people live, but we're not helping them survive a quality of life." At that point is when I got involved with survivorship and I've been doing it ever since. I'm really here today to talk a little bit about some of the work that we've been doing at the National Marrow Donor Program. We have the resources, we have a large research arm of National Marrow Program, Be The Match. I think some people don't realize that.

01:42 Database of information about survivors’ issues after transplant:  Our research arm is a collaboration between the National Marrow Donor Program, Be The Match and the Medical College of Wisconsin. It has that horrible long name that we're thinking about changing that's called the Center for International Blood and Marrow Transplant Research. Isn't that awful, CIBMTR? But your tax dollars pay for data, information about you, about your transplant to be reported to our research arm.

We have a huge observational database, so 100% of allogeneic transplants and how you survive and how you live are reported. You may not remember that was one of those 29 pieces of paper that you signed before your transplant. Centers voluntarily report information about autologous recipients, and over 80% of autologous transplants are voluntarily reported. You might say, "Why not 100?"

It takes time and energy, right? For a center to fill out forms and submit them. We know a lot about survivors, and we want to know more. We have a special group within our research group that is really focused on patient reported outcomes. Exactly what you tell us directly that's important to you. We're really excited, and I'm excited to tell you a little bit about some of the work that we've done here today and more about what we're doing in the future.

03:07  Overview of Talk:  Here's what we're going to talk about today, and you have a green sheet, so you can follow along if you'd like. I'm going to talk about what a personalized survivorship care plan really is. How many of you have one? I got one, going for two? Anyone have a survivorship care plan? Okay, well that's good, we have something to talk about. If you did, we could go on, have a cup of coffee waiting for the next session.

We're going to talk about that, why you need one and how to get one if you don't have one. The role of your transplant center, you, your caregiver. I loved that, Plenary talked this morning about how a caregiver is a co-survivor. I mean, I really think that's true. For the terms of the day to keep us organized, I'll use the word caregiver and how to coordinate.

How many of you just have one doctor? How many of you have two? How many of you more than two? Okay, takes a while to coordinate among them, who's doing what, right? Okay, so we'll talk about that a bit as well.

04:11  Survivorship research started with a study on cancer survivors:  This started, the survivorship concept really didn't start with transplant survivors, it started back with cancer survivors and that makes sense a bit about where the Institute of Medicine really looks out for healthcare in the United States.

This was called "From Cancer Patient to Cancer Survivor". They talked about patients that have survived their cancer, they're often lost in transition of that care between getting active care and then how do you go on with the rest of your life and what do you need.

04:46  In 2006, the Institute of Medicine published this large document that laid out what cancer centers needed to be doing in order to provide optimal care of patients at the end of their treatment.

They said that at the end of the treatment, so let's say that you had lymphoma, when you were done, you should receive a care plan, whether or not you went on to transplant or not. It was supposed to include how to prevent, watch for and look for any side effects of the cancer. How to watch for any new cancers, because if you've had one cancer, unfortunately you're a bit at risk for having something else. And that coordination of care that we were talking about.

So it took another six years, but what happened in 2012 is that the Commission on Cancer, and they accredit cancer centers, so cancer centers undergo formal reviews, and what the 2012 commission said is that they wanted to phase-in for the next three years by 2015 survivorship care plans. Meaning that for a cancer center to receive accreditation, which means they receive money, they receive support, they have recognition of being an accredited cancer center, that the cancer center needed to develop care plans for their cancer survivors.

It had to be prepared by the principle providers who coordinated the treatment, so one person be in charge of it with everybody feeding in, so you have one central plan. Give it to the patient when they finish their treatment: and it contains a complete record of all the care received, everything about their disease, a follow-up plan based on the best evidence that we know now. They required that it be rolled out over five years. They said, "All right, we'll give you five years to implement this, such that by 2016, a quarter of your patients that receive care for cancer at your center have to have a care plan. 50%, and by January 20, 18, 75% of patients."

Transplant patients were not at all addressed. This really just had to do with cancer. As you know, many of our transplant patients don't have cancer, they may have sickle cell disease, maybe they have aplastic anemia, maybe they have hurlers syndrome and you're the parent of a child with an immune deficiency. Transplant patients were not addressed at all in these rulings. We in the transplant community were asking, is anyone focusing on transplant patients? Hey, we not only had a problem, we had to go on and even have more therapy.

08:01  Transplant programs now need a survivorship program in order to be accredited:  The answer is yes, there were people that have been working for you. Here are the people that have been behind the scenes trying to make a difference in survivorship care plans. The National Marrow Donor Program/Be The Match, The American Society for Transplant and Cellular Therapy. They were known as ASBMT. As we mentioned, I started a survivorship special interest group and we had patient representatives on those. I started back in 2016, we started with a small group, about six of us that was interested. At our meeting this year we had 120 in standing room only of physicians that are interested in caring for survivors and helping move the field forward. I

And FACT - this is the Foundation for Accreditation of Cellular Therapy. Why is this important? Because they accredit transplant programs. In March of last year, they said for the first time that a transplant program has to have a survivorship long-term follow-up clinic. If you're being audited and you are being audited on that, so that's really making a big movement forward.

09:06 There will be an estimated half a million stem cell transplant survivors by 2030: How many survivors are there?  Well, we estimate that there's going to be almost a quarter of a million by next year, and half a million 2030, all right? You're standing strong. A lot of that is related to the advances that have been made over the years that were really able to help patients get through transplants safer. Older patients, the largest growing population of transplant recipients is 60 years of age and older. We want older patients to be able to survive longer.

09:41  Many survivors of both autologous and allogeneic transplants develop health issues after transplant:  Here's the problem, is that many survivors develop some health issues. These may be short or they may be longer, and it's just not recipients of allogeneic transplants that develop problems, it's autologous patients as well. I think some of us think, "Oh, you had an auto transplant, you must be back to normal by now a year later." That's not always the case. I know survivorship transplant physicians are dedicated to making this better, but we have to have some knowledge.

If you take a look at this, this is a publication by Dr. Sun. This was published nine years ago, and this was the autologous transplant patients. These are the ones that are allogeneic, had a donor. This graded just complications, side effects, health issues; and graded them from one, not being very much, not being very severe, up to five, being pretty severe. You can see here that both patients who give their own stem cells for an autologous transplant as well as allogeneic, that overall 50% of them did have some health issues. This was at five years out. And it didn't plateau, it kept climbing. Don't let this scare you, what this means is that we need it to get in there and help.

Even as we age, all people have health problems; but we know that patients who age after having had a transplant are more likely to have some health problems. It can be dependent on what treatment you had and what disease you had. You're not like everyone else, we need to make a care plan personalized just for you. In 2012, I, along with several colleagues, joined together to create the first recommended screening and practice guidelines for survivors.

11:32  International effort to create survivorship plans for transplant patients:  What I'm really excited about is that this was led by Navneet Majhail, he was one of my fellows. I help train him, recruited him, and he's the president of the American Society for Transplant and Cellular Therapy this year. You have a professional in the society, our American society who is dedicated to survivorship. I think there's going to be even more movement in survivorship this year.

This was international, I put this up here just to show you that this was just not an American effort, this was European, Asia Pacific, Australia, New Zealand, Eastern Mediterranean and Latin Americans. This now has become a global effort to help survivors. In fact, we know that developing countries may not have the resources that we have here in the United States to help survivors. So, we've said, "What is the bare minimum? What can you do if you're a developing country?" I just returned last week from a meeting in India where I also spoke about survivorship. They're working hard to try to do that, but with limited resources. It really is a global effort, and one of the things that we can do to help that global effort is to provide guidelines and make it easy, available for resources.

Some of you may be very familiar with these. We took these guidelines that we published and we turned them into guidelines for 6 and 12 months and annually after transplant, both in paper form and then in an app. It provides simple medical descriptions, a checklist to take with you. If you have nothing else, this is really a great resource for you. You can learn more at our booths here today.

We also know that doctors need to be educated. Us in the survivorship field, we're really interested, and we have the guidelines in our head; but others who may not be so much may not, and they need to have an easy checklist. These are based on the 2012 guidelines and we're working to update them now. I'm going to tell you about a little work that we did to try to update them.

13:42  Each transplant survivor needs a personalized survivorship care plan:  Why is this worthwhile for our transplant survivors? Well, each person had a different disease, you had different treatments for that disease, you had different treatments for your transplant, you have different age, you have different genetic makeup, you had different complications, different infections. You may or may not have graft-versus-host disease, all different things that are going on with you. You need a personalized care plans; and we think that education is empowering.

If you have a plan, I don't know about you, but if I have a plan, I feel a bit more in charge. I feel little less scared, I feel a little less anxious. "Okay, I've got a plan, here we go." That plan's for me, I feel comfortable with that. We really believe that if we can have uniform care that's based on the best evidence, research showing this is the best thing to do, and doctors and caregivers and patients know that, and we can update it easily, it seems like that could improve care, that it can reduce the complications. If we know what the problems are, can't we work backwards and figure out if we need to do something different for different people to help them live longer and healthy?

That's what we asked within the National Marrow Donor Program, within our research group, can we develop a personalized care plan and will it help, will it help in any way? This is some work that we did, it was published recently. It's available to all transplant centers. We fund our own research. This was funded by the Patient Centered Outcomes Research Institute that was created by the affordable care act.

15:33  Researchers asked patients what they would want a survivorship care plan to look like:  It is focused on research that helps patients. That's really all that they fund, patient centered work. We thought, we're going to ask patients, "what do you need? What do care providers need? What do caregivers need?" What we started with is that we did focus groups, so we called and talked with folks. We said, "If we were going to create what's called a treatment summary, all the treatment that you've had, in a plan for a patient, what do you want it to look like?"

Our bone marrow and transplant recipients and caregivers, we gave them this is what it looks like, should we change it? It went through multiple changes saying, "No, you need to do this, you need to change this section, this section isn't helpful. I need a place to put notes, I have to write down things. Where do I put my questions? Where do I keep my test results? I see 10 doctors, where can I keep that information?" Then we also talked with the primary care physicians.

Many of you go back to your hematology or oncology doctors maybe at 200 miles from home, or you see a nurse practitioner, or you see a physician assistant, or somebody in that office. They wonder "well, what happened to you down there? What did they do?" They may have gotten a summary that's all medical jargon that doesn't really say what happened to you and how you can coordinate the care, what you're going to do, what I'm going to do, when the patient's going to come.

We talked to the bone marrow transplant physicians, particularly those that weren't involved in survivorship care. "What do you need? What makes it simple for you to provide this information to your patient?" We talked to the nurses and social workers that are often involved in coordinating of care as well."

17:24  Example of transplant treatment summary and survivorship care plan:  We developed things that I'm going to show you a little bit closer up. This is an example, we created a blood and marrow transplant survivor treatment summary. That would have the patient's name, the date that it was created, and then some medical information here, including important past medical history at the time of transplant. Then transplant information, and this is only one page of several pages.

This transplant information would include what chemotherapy drugs you got, the doses. Some of those bother your heart, right? Maybe you didn't have a chemotherapy drug that bothered your heart, so you're different perhaps than what you need than someone else who did. Did you have radiation? Are you a woman? Did you have radiation to your chest- which is a greater risk of breast cancer? All those types of things go here.

Then in addition, you have a survivorship care plan that's made just for you. All these gray areas are areas that we can put in information that's dedicated just to you that will have just your recommendation. There are basic ones that everybody should have. There are ones that you specifically need to have and how often.

This was what we did. This was a study where we took the recommendations that were based on best evidence that we had published in 2012, and then we took this data. This is that research group that I helped lead, and these are the transplant centers. As I told you that they routinely provide information on 100%, that's all the allogeneic transplants and over 80% of autologous transplants. We know- and this is all de-identified, that means that your name is stripped, you have a unique number, this is all anonymous, we'll make sure that you understand that- but we were able to incorporate a whole bunch of information about you.

This isn't even the whole list. You can only get so much on a slide, but we know what disease you had, what therapy you had, who your donor was, how old you were, what kind of transplant you had, if you had radiation or chemotherapy or mini transplant, or big doses of transplant, if you had radiation, did you have graft-versus-host disease? Had you been on steroids? We know what infections you had, that's all there. It was no additional burden to the transplant center. They already get this information, it's there. We figured out a way to use that and pull that into making the survivorship care plan for that individual patient. It is no burden to the transplant center and no burden for the patient, okay?

This was a study that any patient who was one to five years out from an autologous or allogeneic transplant could participate in with any disease, any type of transplant, any graft source. We wanted the disease to be in remission- because if you're getting additional chemotherapy one, we didn't want to burden them and feel that the study would be hard for them- they could have had more than one transplant, so, really, we wanted to be generalizable. That's a word that's used in research: that we don't want to do something for this little group of patients, we want to do something that then, if we get the results, it can go out into the general population, it works for everyone. They were randomly assigned, the patient's again, like flipping a coin, to whether or not they would get a personalized care plan within the first few months. I'll tell you why the first few months.

So, we have 17 transplant centers. Some people say, "Well, how did you pick the 17 transplant centers?" Well, we picked our best friends (no, we didn't). We did pick some colleagues that we knew we really enjoyed working with and were really interested in the study, because we needed to enroll patients. We also wanted to make it representative of the population. All the transplant centers weren't in Missouri, that wouldn't make much sense, right? We have transplant centers that are scattered around. We want transplant centers that just don't serve people that look like me or my husband. We want transplant centers that serve everybody. We're a large, diverse group of Americans, we wanted everyone here. Our 17 transplant centers, and they agreed there would be one person at each center that said, "Yeah, we're going to help with this study, let's get it done." The patients had to agree, we just didn't do it behind your back, patient's agreed. We made them a personalized care plan based on that information.

Then our research group, they sit right outside my office, I hear them on the phone every day, called each patient, introduced themselves, the study, and did a baseline assessment of the things that were going on with them in their life after transplant. Then they were randomized, didn't get to choose to what we call where they got their individualized care plan, or they didn't. Now, don't think that's mean, hold on just one second. We made this care plan, and at six months after the care plan had been received by the patient, we called again and we did another assessment. "How's it been?" Then we sent the personalized care plan to all those that had been in the control group, okay? Everybody that participated ultimately got their plan.

23:25  Results of study of 450 patients about their confidence in knowledge about survivorship issues:  What were the results? We had over 450 total patients that participated. That's quite a lot to call and to do all the assessments on. Some weren't interested, but we had over 450, which means over 225 I think that was about in each arm. There weren't any differences between the groups and the confidence in their knowledge about survivorship information.

23:56  Patients who received a personalized care plan were less stressed:  You think, "oh bummer, negative results." No, actually that's really good. I was really glad to see that, that we're at least getting some information to our survivors, and they're the pretty confident about the knowledge that they have. What we did find is that those who received the personalized care plan, is they were less anxious, they were less distressed. They were less worried about transplant complications in a whole variety of areas. The strain on their family, the demands from the care system, health burden, finances, financial burden, their impact and their ability to function, either physically or socially. Over all, the patients who received that personalized care plan immediately, didn't have to wait, had better quality of life.

We thought that these were really important outcomes. We asked them also just some general questions. How useful was the care plan in helping you to better understand transplant and related treatment? The colors to take a look at are the yellow and the blue are very useful and useful. It was green and the orange and the purple, not useful, I didn't do it, didn't respond.

25:17  Survivorship care plan helps transplant recipients better understand potential side effects and how to manage them:  The majority of folks that participated in this study said it helped them to better understand the transplant and related treatment side effects, how to manage your health transplant and related treatment. Also, about side effects, but not in helping schedule appointments. I wonder how this was worded, because somebody has to pick up the phone.

Maybe we should have said, "Help you know when to schedule appointments with folks." They told us when we talked to them on the phone that they'd felt that was very helpful but didn't seem to be much more helpful in some of these areas than those who got the care plan six months later. Here's some things that they also told us. They gave me a list of questions to ask my medical providers in one document.

26:06  Survivor comments about benefit of survivorship care plan: "Before seeing the treatment summary and plan, I didn't know I was at higher risk for certain cancers problems."

"It got me to go for my mammogram, my blood work, my colonoscopy."

Sometimes you feel like you've been through so much, you can't do one more thing, right? You just can't make one more appointment and go for one more test. Then if you see how it looks into the bigger picture, then maybe it can give you that little extra boost.

"The care plan and summary gave me a lot of confidence." I don't know about you, but I think confidence can be one of the biggest motivators in helping and surviving. It enabled me and gave me the knowledge to let the local health providers need to know.

We heard that frequently that the local providers, and I'm not being bad, it's just that transplant's a different world out there, right? It’s different than doing, well-person care and minor health issues. They're really, really good and in fact, they are a critical member of the care team. They know more about the new high blood pressure medications than I do. They know more about how to treat high cholesterol than I do. I mean, I'm thinking transplant, they're thinking well preventative care.

For us to be partners in this benefits everyone, particularly the patient. "It gave me an opportunity to dialogue with my primary physicians and other providers." Here the orthopedist has been very helpful for my wife as well, so bringing in the caregiver.

The plan's been helpful to me and my husband both." I wanted to point this out that what we heard from the patients is that caregivers benefited by having this as a useful tool in one place, one place to be able to document.

"I was blindsided by the emotional aspect of getting cancer." Knowing the researchers were aware of the emotional components and something's being done about this is really empowering too.

"The plan gave me permission to ask for help". Sometimes here's what I need, here are the biggest things, here's what I have.

28:10  All transplant survivors should get a personalized transplant survivorship plan:  We recommend that every transplant center provide a personalized transplant survivorship plan to all transplant survivors, regardless of age, type of transplant, graft sores, complications, everyone.

28:26:  What should be in a survivorship plan:  What should it have in it? We've published this but let me explain to you as well what your treatment plan should have. It has to be the entire journey. Your transplant didn't start here, maybe that was day zero and to you that's in your mind, but for a survivor, in order to live well and live healthy, we have to know what's been happening here.

That if you've had high blood pressure since you were the age of 20 and now you've undergone a transplant, we know that just having had a transplant puts you at higher risk of having high blood pressure. If you've had it all your life, that's a flag, right? You're going to need to be monitored more closely. I've divided this up into the green, what we need to know before your transplant journey began.

Your pre-bone marrow transplant health concerns, everything that happened to you at the time of your diagnosis before you even underwent a transplant. All of that therapy that adds up to this whole journey. Your transplant therapy, whether or not you had graft-versus-host disease, infections, what medications you needed. Medications can have side effects, some can be long-term.

What happens then in your long-term journey? We know everyone's a little different. If you were a smoker for 20 years, that's going to be a lot different in terms of what you're going to need for long-term. If you have a family history that everyone has heart disease in their 50s, we know that patients have undergone an allogeneic transplant have heart disease 10 years sooner than the general population.

We need to know your entire journey. What about the pre-BMT assessment? This is your primary care, so this is where we need to work with your primary care physicians and your oncologist, hematologist. When you go for your transplant consultation, they provide information. It's often in the course of a cover letter and it focuses primarily about your disease.

Sometimes we get some of the baseline laboratory test. Sometimes we know some about your past health. A lot of times we don't, and often we don't even get the entire doses. This behooves us as transplant physicians to work with your primary doctors and your oncologist and hematologist to get that information at that point of contact, so that we exactly know all of the doses you received, what complications you had.

Did you have infections? Have you had high blood pressure? Have you had high cholesterol for 20 years? Do you have heart disease in your family? All of those issues, that needs to be compiled. That's a point to our physicians at the very point of entry into the transplant world to gather that information. We need to know if you had radiation as part of that treatment, if you had immunotherapy.

Did you have surgery? If so, where? What long-term side effects? We may think about management, so that's one aspect of your care plan. Then you get to transplant, all right? We need to also keep track of contact information if your primary provider changed, so that you always have in one area who's where and who's doing what. The conditioning preoperative regiment, it varies for everyone.

As you know what time is changing, right? A patient that had a transplant last year, his conditioning regimen may well be different than it was five years ago. That record has to be kept, because each one of those medications or drugs or dose of radiation has a different side effect long-term. How many people are getting immunotherapy? CAR-T cells, I mean, everything is changing. Each one of them impacts your treatment plan.

Radiation, we're really trying to get away from radiation. Why we're trying to get away from radiation? Because with research we've learned that radiation can give long-term side effects, so really trying to get away from radiation in all of our therapies, transplant and pretransplant. Important to know the type of transplant. Allo's different than Auto. Haploidentical, did you have cyclophosphamide after the transplant?

The stem cell source, the donor gender, so we know that if we can watch for disease coming back and whose cells, who's going to be doing that? The graft-versus-host disease. When I started out, there were a couple of drugs to help prevent graft-versus-host disease. Now we have about seven different ones in clinical trials. We have to know what you had was different.

That's the bone marrow transplant treatment summary. That should be provided by the transplant center to you and to your other care providers, okay? Remember at the front desk they ask, "Who do you want something sent to?" Give them a list. Do you know who to send it to if we have the list. Engraftment, were there any problems with your cells coming in?

Did you need growth factor? Is that knowing that you had growth factor and how much, is that going to be important now? Maybe not so much as important 10 years from now if we know There are issues with that. The graft-versus-host disease, the types, the parts of the body, infections, any other health issues that you had. All the medications, all the side effects, likely course of recovery, symptoms to watch for.

33:52  Without knowledge of your transplant history, a local health care providers may confuse a transplant complication with another health issue:  As you go back and transition to care and even long-term that a skin rash to a primary hematologist and oncologist may look like a reaction or eczema. To us it may be the beginning of chronic graft-versus-host disease, okay? Oh, and I wanted to make one more thing, symptoms to watch for, plus what to do, who to call and who to see, right?

34:18  Coordinating care after transplant:  Who's going to manage that? Is it the patient's responsibility to call the primary care provider? The care provider says, "I'm not sure whether it is." Check with the transplant center, then you go home. Then you call the transplant center, or does the primary oncologist in the center say, "Mrs. Jones is here, she has a rash. I'm not sure what it is, an appointment is made," and you have it taken care of and a plan made.

That's different than you say, "Okay, then I've got to go home. Then I've got to call and wait for a call back," okay? The long-term follow-up care plan, so this is a schedule of all of your planned follow-up care according to a personalized plan for you. Who's going to schedule it? Who's going to provide it? Where is it going to be done? How often the visits are needed, what tests are needed, why they're needed.

Why they're needed is incredibly important. What visit that are going to be done, who's going to order them? Who's going to tell you the test results? What they mean and what's the impact for you? Does your care plan change, okay? Care plans will have to be kept updated, because your lives change. How to use your plan. Refer to it often, use it to know when to schedule appointments and which provider.

35:35  Take your care plan to all your doctor visits and get copies of all test results from your visits:  Take it to all your visits, use it to ask questions, take notes. Record what was done, what the results were. Those results belong to you. My dad goes to the doctor, he's 94 and he has something done. He says, "Well Linda, they told me there was a little bit of a problem, but they'll keep an eye on it." I said, "Well, if you'll tell me or send me a copy of it."

"Well, I don't know, I don't have the copy." Do you remember how I'm standing there with a glass of wine in my hand, I shouldn't be saying that. My hands start shaking, right? It was a nice evening so far, and then I'm just like, my father, how many times have I told him, "Please Dad, just ask for a copy of your results." They belong to you, your medical records are yours.

As a physician, if I had a CAT scan result you pull up on the screen and you hand them the results. Hand your patient and make sure they understand in lay language what it meant and what we're going to do about it. It is your right. I try to move patient care, then physicians on how they manage patients. Those are yours, make sure you have them and that it's been explained to you.

36:49 Share your care plan with your family caregiver:  If the doctor doesn't have time, the nurse, a coordinator, please make sure that you ask, I want you to know. I also, did I say this? To share your plan with your caregivers. Your caregivers are an important part of your support team, all right? So that they can help you coordinate all these visits, remind you. It's really helpful I think for parents to be able to keep track of all of these things that's going on with their child.

37:20  Unique issues for pediatric transplant survivors:  Pediatric transplant survivors are unique. I mean, they're at the other end of the spectrum of an older transplant recipient, because those kiddos are changing. Their lives have really been impacted in terms of their growth. They have a much larger span of potential late complications that they underwent a transplanted at two than someone who is 75, all right?

37:43  What to do if you don’t have a care plan:  We have to keep that span alive, so what if you don't have a care plan? What if you never had one? What if it's old, okay? What do you do? Well first off, I would ask your transplant care team to prepare one, all right? Then not only prepare one, they just don't mail it to you, they review it with you. It may take them time, if they're not used to doing this, of pulling up medical records and putting together a care plan for you.

Ask about anything you don't understand. If you had a care plan, but was several years ago, it probably needs updating, because things have changed. We know more than we did even 5 to 10 years ago about what's best for transplant patients and what testing should be deemed done. Your care needs may change. If you've developed hypertension, if you're now on medications for thyroid disease, those may need to be updated.

Is it really that important? I hope I haven't overwhelmed you and you're going to walk out of here thinking, "God, the morning was going so well. I was a hero an hour ago, now I'm a hero in need of a care plan. God, I thought I was doing so well." It is important, and you don't have to rush right out and do this right now. It's a beautiful weekend, I mean, it's double the temperature that it is in my hometown this morning.

You don't have to do that, but the next time you have a visit, even if it's your primary doctor, your oncologist, or you're down for the transplant center. Say, "I don't have this. I'm hearing about a treatment summary and care plan, could you help prepare one for me?" It may take them a while to pull together the information, but I think it really will help you. The best thing that we're really looking for is to prevent complications, because a lot of these are preventable if you just know about them and can watch for them, okay?

39:40  Summary of Talk:  Here's my take-home points. A personalized survivorship care plan's critical in maintaining good health after transplant. Your transplant team should provide one for you, help keep it updated, take it to your appointments, use it to keep track of what needs to be done and share it with your caregiver. I just want to acknowledge, these were all of the transplant centers that participated in this study.

I want to thank all the patients and caregivers who gave time. Our patient services advisory group, so we have patients and caregivers who are on an advisory group for us who also reviewed all of this and provided comments. Our research program and our funding, and what we've done with this is now we've moved to the next step. We are now funded by the National Institutes of Health, another large study.

We've just finished and published more focus groups with patients and care providers. We've developed a mobile app, an upgraded one that will provide healthcare on an interventional level. The PIs are at the Fred Hutch Cleveland Cancer Center and National Marrow Donor Program. We've just completed all the focus groups and published them.

The next iteration of this will be started. It's a four-year research study, so it takes a lot of time to sort some of these things out. In the meantime, this is the best we have right now. It's published, the University of Nebraska just contacted me this week and wanted copies to implement into their survivorship clinic. Feel free to use my name.

We can send them, stop by the booth. I had one more announcement to make, is that if you're interested in helping, if you had a transplant within the past year, we're asking patients what they wish that they knew about clinical trials. If you're interested, you're an adult, had a transplant within the last year, please stop by our booth. It would be a phone conversation, we want to hear from you, so thank you very much for your attention.

Question and Answer Session

41:54  We're going to have about not quite 15 minutes, and if you have any questions, I'd be happy to take them, so everyone can hear. I'll also be hanging around, so you can come up and talk with me personally, so thank you very much for your attention.

42:13  [audience member] Question about how you get transplant teams to give you a survivorship care plan: I do have a couple of questions.

 [Burns] Sure.

 [audience] It sounded great and how many people put their hands up?

[Burns] One, there was one.

[audience] That means most of us don't have a plan.

[Burns] Yeah.

[audience] What are the logistics? I mean, I saw those 17 participants, but what if you're at a Northwestern, or a University of Illinois at Chicago and you say, "Hey, I just went and I heard this new thing-"

I heard this talk. Now by law, did you say by law, or it's being funded by the ACA?

[Burns] In order for a cancer center to be accredited, but it's interesting, if you read the language, it's cancer patients.

When we go to them-They're going to look at us like we have moon eyes. Like what the heck are you talking about? We can't do that, we can't get how much chemo we gave you. What kind of report are you looking-

[Burns] Oh, they can, oh, they can.

[audience] Do they have the format of this report?

[Burns] Yes, and it's published, it's there, and you're asking me well, could you send it to every single transplant doctor in the country and all the hematologists, oncologists, so they have it. It is, it is, it's right there.

[audience] We should go to our transplant center-

[Burns] They can contact me, if they don't know how to reach one, they can contact me, yeah. You could even just give them my name, but it's in transplant literature. It has been published in our national journals of the transplant societies in the United States. I mean, everyone reads them, it's global, but we put it in the journal that every transplant physician should be reading, yeah. It's there, and you're going to say, "Yeah Linda, yeah, I know."

You look like my dad when I tell him something. You're like, "Yeah Linda, I'm not so sure this is going to work, but-" The best they can say is yes, the worst they can say is no.

Yeah, and also just pick up some information, NMDP is our patient navigators. A simple phone call, if they contact the patient navigators at NMDP, we'll get it right to them. Yeah, we'll get it right to them, so if anyone wants it, yeah.

That was what I was going to say. I'm a patient [inaudible 00:44:29] and I have the booth there and if you call, we'll help you. She will give it to us and we'll get it to you.

[audience] That's what I'll do.

[Burns] You can go with your doctor.  If anyone's interested, stop by the booth, pick up the patient navigator information. Doctor can just call there and we'll get it right to them. Will that help?

Yeah, you've got to know, you can't walk out of here and say, "Well, that all sounded great," yeah. I won the lottery, but my God, I lost my ticket.

45:01  [audience] It can be difficult to get the courage to tell your doctor about all the problems you’ve had since transplant:  I'm 30 years old and it took a lot of courage for me to actually sit down with my doctor and explain to them that since transplant, I've had a hip replaced, shoulder replaced, C-diff, burst appendix, all kinds of things. Sometimes we're afraid of how they're going to react, or they're going to give you that stern look or something like that. You've got to do it from your heart and you've got to look this person in the face, and this person has to have this open stance like they're ready to listen to you and you let them know what you need. I need this, I need this.

[Burns] Did that work for you?

[Audience] Sort of. It's in the process. You have to keep talking, they're not going to react on the first or second try, you have to keep trying.

46:04 Finding a transplant survivorship clinic:  It's going to get better, it is that we knew about five or six years ago that there were around 30, 35 long-term follow-up clinics in the United States, the certain centers. With the awareness, raising awareness through multiple methods that through NMDP we just completed a survey of every transplant center in the United States. I got 100% response rate.

I nagged everybody, I called them, I emailed them multiple times. Rob if you don't answer me, I'm going to call you tonight at 7 PM and interrupt your supper. 100% got back and we know now of every transplant center in the United States who has an adult program, who has a pediatric program and who runs them. We are launching an in-depth evaluation of all those centers about best practices right now.

Awareness is growing, awareness is truly rolling. The thing is, is that we're putting that on the public website for NMDP, so those people that sit up on the seventh floor that are smarter than me, and all I know is that when something doesn't work is I reboot. If that doesn't work I'm done, but those people know how to do stuff.

They're putting it on our public website, so that any person can go on and see where their closest survivorship clinic is that provides survivorship care. Whether or not they provide pediatric, adult, if they accept survivors regardless of where you had your transplant at. That's a public service, we're hoping to have it up and running this summer, but we did the survey first.

We closed it, they're working on it. You can go online, BeTheMatch, plug-in a state and know where expert survivorship care is. I should have put a slide up becoming- [inaudible 00:48:02] I don't know if it's all up there yet, we started. I don't know if it's all up there yet. I should go in and look, but that was in my goal. Oh shoot, to get that up ... I'm an experienced speaker, to get that up by the summer.

Watch for that too, and that might be really helpful. We thought it would also be helpful that if people relocate during wintertime. I know in Minnesota the state just empties out, it's like college is out. Where if you needed survivorship help, you would also know, if I'm in Arizona, where's a survivorship clinic? I can call, I need someone to help me, I'm a survivor, I need help, yeah.

48:38 [audience] Linda, as somebody coming from a transplant center, I mean, survivorship makes sense and it's great, because we have so many survivors. This wasn't as big of a challenge 15, 20 years ago.

48:48 [Burns] No, we're lucky.

48:50  [audience] As somebody that's coming from an area that There are a lot of ... I'm going to call you snowbirds, but snowbirds that come down, we do, do a lot of that. The doctors have the patient's best interest at heart. If you go to a doctor and they don't seem to have patient's best interest at heart, I would recommend you go to that website and find another.

49:07 [Bruns] If you have your survivorship care plan and you know that you're going to be gone for six months and you need to have this and that done, you've got it right there and you know and they can help the coordination of care for an appointment for you to get your work done when you're gone question. That can be helpful.

49:24  Question about funding for the survivorship study:  Hi, you mentioned in the beginning that this was part of the affordable care act, funded by the affordable care act.

49:32  [Burns]We were funded, who gave us the money to do the study that we did is PCORI, it's the Patient Centered Outcomes Research Institute, and it was created as part of the Obama affordable care act.

49:43  [audience]  Yes, isn't that a political football going on right now? What would happen to the program if it goes away?

49:52  [Burns]  Yeah, I think that's a real good question about what would happen. PCORI is an Institute that funds this type of patient centered research. It's just not for cancer, they fund all patient centered research as the study section put through. There was concern about whether or not the funding for that would go forward. So far it is, they're continuing to fund everything.

I think it was felt to be so important by Congress that ... There was a little concern a couple of years ago, but they fund interventional studies such as this one. They fund ... I actually put in perhaps a request for funding for post-transplant stress disorder after transplantation. They fund a whole variety. They're very interested in telehealth, which I think is going to make a huge difference for survivorship care.

That if you live some distance from the transplant center and can speak with a survivorship expert and not have to travel 200 or 300 miles. They're very interested in telehealth right now, so they're a wonderful funding agency that's really, I think, promoted patient centered research. It's a good question, but so far so good, yeah, yeah?

51:06 Question about how many transplants are performed annually:  I have a question. You said There are 240,000 in 2020, I'm curious to how many transplants are actually performed a year?

51:21 [Burns] That was just in the United States survivors I think, that's not globally. There's a difference between those, whether or not that's the United States or globally. In the United States there are I want to say around 11,000.

51:36 [audience] A year?

51:39 [Burns] Yeah, we facilitate ... I've got the slide on my computer. I should pull it up, I'm giving that talk next week. There are more autologous patients than allogeneic patients performed in the United States, but it's in the thousands, yeah

In the early days, in the early days, there weren't that many survivors unfortunately, so it's been within-

52:09 [audience]What's the early days?

52:12 [Burns] 1978 to 1980. As I said, I did my first transplant in 1984, and at that time the risk of dying from an autologous transplant was about 15% to 20%. Today it's less than 1%, and for allogeneic transplants, the chances for dying were reproaching up to half, and now we're down at 15%. Then patients died from complications after transplant, yeah.

Age-related, the fastest growing population is 60 years of age and older, because now we know that outcomes with scientific advances are the same for older patients as they are for younger patients. The fastest growing population is 60 and older.

52:57  Were MD Anderson and Dana-Farber involved in the study? Another question: are the transplant centers that you had listed, that you're working with, two notable absences, from my perspective anyway, was MD Anderson and Dana-Farber. Why aren't they involved?

53:12 [Burns] Yeah, so There are 100, almost 140 transplant centers in the United States. Those were the ones that expressed interest, okay? In doing it, that said that they would be able to enroll patients and wanted to work with us. We couldn't manage every transplant sent to the United States. Every has to go through their IRB, and we wanted a diverse population.

It really mattered about whether or not they wished to work with us, that they wanted to enroll patients. Right, not every center, I'm asked that every time I talk about this that my center's not on here or whatever. At the time that, that study was initiated, we wanted a mix of those that actually had survivorship clinics and those that didn't.

There are a lot of things that went into that, so it wasn't they're bad centers or they don't do research. Those are great centers everywhere, but just geographic diversity as well in picking centers. Any other questions? I'll take hers, yeah.

54:22 Question about how donor genetics affects the transplant recipient long-term:  On one of your slides, you commented on something that actually made my brain started working a little better. You commented about the stem cell source and donor gender. Well, I'm a three-year survivor, and I was wondering how does the donor genetics affect me now and perhaps later?

[Burns] Donor gender and donor genetics? A couple of things, donor gender is really important to know, primarily in terms of following your disease. If the disease would start to come back, particularly if you were a woman and you had a male donor, that you could often easily tell if your cells were starting to come back, because your cells would be female, and those cells would be male, all right?

If you'd had a male donor, then you would have to do additional testing to find out whether or not your cells were coming back, and you were losing your donor cells. Does that make sense?

Yeah, so that can be important to know. In terms of other things, it's not the donor's health issues or things. Really, it's male or female, and then donor graft has to do with whether those peripheral blood stem cells, whether or not it was bone marrow cells. Was it an umbilical cord blood? Each one of those may have potential longer-term side effects, so that's what we mean by graft source. Does that make sense?

PBSC, bone marrow, umbilical cord, yeah. Now we're starting, we're doing engineered grafts, will they have different long-term side effects if the graft has been engineered? Those are some of the key points, so taking out some T cells, Alpha, Beta, Delta re-engineering them. Were NK cells left in, were they left out, those kinds of things, yeah, so engineering. Sure, yeah.

56:30 Question about best way to get doctors to complete survivorship care plans: Thank you. You mentioned earlier that the doctors have a site where they can get the information from. As patients, is it possible for us to bring paperwork to the doctor, so that they can just fill it out, instead of asking them to look for it somewhere else?

 [Burns] Yeah, well that's a really good point, and perhaps we should just go ahead and post the treatment summary. The simple ones, the simple ones are available that I showed you. The 6-month, the 12-month and on the app, all right? They certainly can take those and personalize them to you, but the work that we've done in terms of exactly what things can be personalized is published.

We'll talk, I'll talk with NMDP, but those are available right now. The very basic ones are available. They're on an app, did we bring any for the meeting today? The 6-month, the 12-month survivorship care plans? Come over and we'll provide that information to you. They also have available on their app and all that information is on our website, yeah. Come by the booth, yeah, and that's there. Sometimes it can be hard to find things on the site, so thanks very much. I really appreciate your coming and you're all survivors and congratulations to all of you today.




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