Your Personal Survivorship Plan: What, Why and How

Learn the components of a successful long-term survivorship plan and the role you, your caregivers, your transplant team and doctors play.

Presenter:  Linda Burns MD, National Marrow Donor Program/Be The Match® and Center for Blood and Marrow Transplant Research

This video is a recording of the workshop conducted at the 2018 Celebrating a Second Chance at Life Survivorship Symposium.

It is a 30-minute presentation,


Fifty percent of transplant survivors have health issues that need to be addressed five years after transplant. A personalized survivorship care plan details the follow-up care that is needed for each transplant survivor long-term after transplant.

Highlights of Talk:

  • Every transplant patient should receive a survivorship care plan from their transplant center
  • The care plan should include detailed information about the patient’s health history prior to and during transplant, as well as guidelines for long-term follow up
  • A survivorship care plan can help patients advocate for appropriate healthcare after transplant to minimize the risk of developing complications

Key Points:

01:51  Why create survivorship care plans for patients?

06:17  50% of patients have health issues five years after transplant

07:06  General guidelines to monitor long-term health of transplant survivors

09:52  Subsequent research to personalize long-term follow up guidelines

16:56  Do transplant patients find personalized survivorship care plans useful? 

20:16  Transplant centers should provide a personalized survivorship care plan to every patient

21:09  What a survivorship care plan should include about the patient’s prior health issues

22:12  What a survivorship care plan should include about the patient’s treatment history

24:36  Survivorship plan should specify how care will be coordinated among providers

26:51  What to do if you never got a survivorship care plan, or if your plan is old

Transcript of Presentation

00:00  Speaker Introduction and background:    It really is an honor to be here today, and thanks Sue and the entire organizing committee, and special thanks out to the sponsors for hosting today. But most importantly, thank you for coming. I think you've just heard from Sue that back when she had her transplant, that there wasn't much information to be found about survivorship. And I'm going to tell you why, a little bit, the focus has moved to survivorship issues, is really one of my first loves.

I started working in survivorship when I had a young woman. I inherited this patient - I became her primary physician from another physician who had retired. She was in her late 20s, and she came to clinic, probably the second time I'd seen her, and was in just horrible pain and holding her side. "What happened?" And she says, "I think I broke my ribs." And I was thinking, "Soccer?" I'm thinking all of these things, and she rolled over in bed. It turned out that she really had a lot of bone demineralization, osteoporosis in her 20s. We're starting to learn that we need to help all of you lead long and healthy lives, no matter what your health issues are.

01:08  Topics covered in presentation:  Let's get started. Thanks again for being here. I'm going to talk about the what, why, and how of a personalized survivorship plan. We're going to talk about what it is, why you need one, how to get one, if you have one, how to use it, and the role of your transplant center. All of this is not on you. The transplant center should be helping you. I'm going to explain about how the survivorship plan can help you coordinate your care, because I don't know about you, but I know about all of my patients, and they had multiple providers. And it really does take a village to help our transplant survivors live long and healthy lives.

01:51  Why create survivorship care plans for patients?: :  When did this start? Well, the emphasis on survivorship started in about mid-2000s. And the focus then was on cancer patients, with all kinds of different cancers, primarily breast, colon, those types of things. It started with the Institute of Medicine, and what they were worried about was that cancer patient were being lost as they were transitioning back to their home. And they recommended that every survivor should get a personalized survivorship plan at the end of their active treatment to tell them things to watch for - them and their physicians and care team – and how to detect any side effects of cancer, prevent new cancers from coming, or the cancer that they'd had from relapsing, and to help coordinate care. Keep in mind, this was just 12 years ago, right?

Then it was in 2012 that the Commission on Cancer picked this up. It took another six years of a lot of discussions to say, "Yes. Cancer centers need to do this, and we’ll hold this to cancer centers as part of their accreditation of the cancer center." It said that every patient cared for at a cancer center accredited needed to provide their patients with a survivorship care plan. It needed to be prepared by the principal provider for that patient in conjunction with all the other providers, be given to that patient at the end of treatment, and contain a record of all the care that they had received; everything about their disease that they needed to know about, what the follow-up plan should be, and why, based on the best evidence at the time.

And then they said, "We'll roll this out over five years." It's just been in January of this year that the requirement for cancer centers has been that the majority of patients should receive one. But transplant patients were not addressed. Not at all. Not at all.

03:53  Who is focusing on survivorship plans for transplant patients?  Is anyone focusing on you? And really, you have so many issues even more unique than just a patient that has cancer is treated and secured. You have this lifelong journey. And what I'm here today to assure you, is that, yes, we are focusing on you. This is a process that's been going on, really, for about five to six years, primarily. I'm going tell you where we're at. There are many collaborators in this effort, including the National Marrow Donor Program/Be The Match, where I am. You may know us as the National Registry to help find unrelated donors for transplant, but we also have a large educational and research component.

All of us transplanters are part of the American Society for Blood and Marrow Transplantation. I started the Survivorship Special Interest Group there, where it combines patients, caregivers, social workers, nurses, transplanters, all focusing on advancing the care of transplant survivors.

The Foundation for the Accreditation of Cellular Therapy (FACT) come out and said that if you want to be a FACT accredited transplant program, you must have a survivorship clinic. First time ever. Isn't that wonderful? We're really moving the needle.

05:01  Historically, stem cell transplanters focused on helping patients survive the transplant:  Why is this important? Well, historically, the transplant community is focused on survival. I did my first transplant in 1984 for a patient over 30-some years ago, and we were just hoping that we were going to help that patient survive the transplant and hopefully cure them. And that's what research has focused on over the past 30 years, at helping patients survive the actual transplant. A huge number of advance have been made. Now we have a wonderful issue, right? We have all of our survivors.

05:34  Number of stem cell transplant survivors in the future:  We estimate there's going to be 240,000 survivors in the United States in 2020. If transplants continue at the current pace, we're looking at a half a million survivors by 2030 that need ongoing villages of care. Why is that important? I've just been sitting at my table here this morning. We know that transplant doesn't end with transplant, right? No, it doesn't. And we're really getting better at helping preventing issues, and there's a lot of research going on, I want you to know that. But that we also know that until we can get to that point where we can stamp out every complication, late effect of transplantation, that our patients have health issues that we need to address.

06:17  50% of patients have health issues five years after transplant:  This is a study done by Dr. Sun at the Fred Hutch. And what it shows is that this is the years after transplant. Many of you are way up here, but there are many of you here, at the five year mark. What this shows is that regardless of the type of transplant you had, whether or not that was an allogenic transplant - getting cells from someone else - or whether or not it was a transplant getting the cells from yourself, that about 50% of patients at five years after transplant have some type of health issue. It may be mild, but it might be quite severe. We know that these health issues continue, as time goes out from transplant. We can't wait. The time is now to start helping our patients and address these issues.

07:06  General guidelines to monitor long-term health of transplant survivors:  I mentioned to you that back in 2012, a group of us said, "At least we've got to develop some guidelines. Everybody's doing their own thing, and in some respects, nobody's doing anything. And we need to help the physicians know and understand what is needed." Navneet Majhail was actually one of my fellows, who is now the director at the transplant program at the Cleveland Clinic, so I'm really proud. He started with me back at the University of Minnesota. And why I put all these names up here, is not to draw attention to all of these names, but to tell you that this was an international effort. This was an effort from not only the United States, but from Europe, Asia/Pacific, Australia, New Zealand, East Mediterranean, Brazil, and that's just the authors. We had 30 to 50 people working on this from around the world, and we developed guidelines for those developing countries that are also doing transplants, that don't even have the options that we have here in the States, to provide care.

We're getting ready to update these guidelines, as well. But what we took, was we took these guidelines that we developed over all organ systems. As you know, you're the experts here in the field. You really are. We've got a lot to learn from you. That survivorship issues can address every part of your body, including your social health, your emotional health, your return to work, your interactions, your cognitive function, organ function. We turned these guidelines into three guidelines for patients, and these were just general guidelines. You had to say, "For the general patients, this is what the issues should be."

It started at six months after transplant and then annually. It was a tool for you and for your providers to use to think about the things that you would need to help you stay long and healthy for all of your life. These guidelines also just have a glossary for all these medical terms, checklists. You can get in on the Care app. They're available here today. You'll be seeing them at our booth and at some of workshops. And we went on to provide them to some of the providers who also need a lot of education in this regard. It's both for autologous and allogeneic patients. It talks about the post-transplant screening that you need for healthcare, vaccinations, and that's being updated as new vaccines are coming out. We update this on a yearly basis to all of our organizations.

We also know that as you return to your primary community physicians, that they may not have ever seen a patient with graft-versus-host disease, so we have provided a color atlas for them so that they know what things look like and what symptoms that a patient might have. These are available also for all of our providers free of charge.

09:52  Subsequent research to personalize long-term follow up guidelines:  But we thought we could do more. Right? These are general guidelines, but you're not a general patient, are you? Everyone's journey is different. Just walking through here today, and I know that every one of my patients’ journey was different, and you're unique. We thought we could do more, and we set out, through funding from the Patient Centered Outcomes Research Institute (PCORI). This was funded by the Affordable Care Act, and it's patient-centered care. The first time we're asking patients, "What do they need? What is important the to them?"

What we did is we had phone focus groups that provided feedback. We talked with patients and caregivers. They were the most important group. But we also needed input from those that care for you back at your home. Right? Hematology/oncology physicians, primary care physicians, internists, family practitioners, pediatricians, nurse practitioners, physician assistants. And we talked to transplant teams.

What we did is to really try, then, with that feedback, to simplify language, to add sections. We heard that they needed information regarding sexual health, emotional health, financial health. Things that as, perhaps, a physician, we don't think about every day. You come into the clinic, we listen to your heart, your lungs, check your skin, but did we ask you, "How is the thinking going? Are you able to ..." I used to use the example, balance a checkbook, but I'm not sure anybody does that anymore.

11:28  Anecdote about patient who was a chef and had cognitive problems after transplant:  I remember the time I had a patient and she was an accomplished chef. And I finally realized that one of the things that was bothering her most post-transplant, and it shouldn't have taken me that long to sort it out, is that she loved to cook. And her life circled around could she cook? And she couldn't follow the recipe on the back of a Betty Crocker cake mix. And it was like, "Oh my god, Linda, what were you thinking? You've got to do something." And we did. We helped her. We did some testing, and figured out skills that could help her, and she went on to return to being a chef. But everyone is unique. Everyone is unique. We've really tried to simplify this and make it easy to read and add what our patients told us.

12:14  Sample of a treatment summary in the survivorship plan:  This includes a treatment summary for an individual patient, prepared on a certain date. It includes your medical information. What did you have coming into transplant? Your survivorship didn't start on the day of transplant. That was your new birthday. But your journey started way back when. You may have had immunodeficiency syndrome. You may have had anemia. You may have had low blood counts. You may have had a whole variety of cancer or non-cancer conditions that needed a transplant and need attention.

That information will be placed here, and then transplant information, including the type of graft that you had. And then, individualized for you by organ system, questions to ask your doctor, and notes.

13:04  Personalized survivorship care plans were tested with patients:  We feel that research advances the care of patients. What did we do? We said, "Well, let's do a study to really put this now into action." Again, this was funded by our PCORI grant, and this was a several year grant. The idea was the Center for International Blood and Marrow Transplant Research - this one had a long name, so CIBMTR - that's the research arm of Be The Match, and the collaboration of the Medical College of Wisconsin. This is all the research that we do. You probably have heard of us if you had a transplant, because your transplant center may have told you about this, and if you're willing to be contacted for research in the future. Many patients are.

But all of your information regarding your transplant is submitted by federal law to the Center for International Blood and Marrow Transplant Research because we are supported by funding. Your tax dollars help support this research. Every one of you sitting in this room help support this type of work.

This data is routinely submitted from all the transplant centers to the Center for International Blood and Marrow Transplant Research, and your information is sitting at Milwaukee, and some at Minneapolis, and that includes a whole lot of information from you that your transplant center collected when they met you, and when you underwent your transplant, including your age, your gender, what type of transplant you had, what kind of conditioning, whether you had radiation. We know radiation can add to complications post-transplant that you can prevent if you know about them. Whether or not you've developed any graft-versus-host disease, whether or not you're on prednisone. A variety of things. That all came from those guidelines that we developed back in 2012. But we personalized it just for that individual patient. That became their personalized survivorship care plan.

Patients that were eligible to be part of the study were one to five years after their most recent transplant. We took all patients. We wanted this really to be generalized for every patient that has a transplant. It was adults. I will say that, so it wasn't generalized to children. All types of transplants. You could have more than one type of transplant. And then patients were randomly assigned. You probably heard randomized. You don't get to choose, because that could be biased. Your doctor didn't get to choose, it was just by random, kind of like flipping a coin; the computer is assigning you to receive a personalized care plan, or not. And whatever the transplant center routinely did, whether or not they just talked with you, and called your doctor back home, maybe they provided you some information. Maybe they provided you quite a bit of information. But it was just randomized.

15:49  17 transplant centers participated in the research:  And how this worked is we have 17 transplant centers throughout the United States that wanted to work with us. We identified the patients, one to five years after afterwards, with all the diseases and transplants. We then contacted every patient again and asked them if they wanted to participate. And if they did, we made them a personalized care plan out of all the information that's already stored. It's already there. The transplant center's already submitted that. And then we give them a call. We did some baseline assessments about their overall health. And then randomization to either getting that personalized plan ... We sent it in mail, made sure that they got it ... or the control arm, where they just got whatever their transplant center routinely does for survivors.

At six months later, we called again. Did some phone assessments. We had 199 patients that ended up participating in the control arm, and 231 in the plan arm. And then when the study was done, we sent that personalized care plan to all the patients that had been in the routine arm, so by six months everybody had their personalized care plan.

16:56  Do transplant patients find personalized survivorship care plans useful?  We asked then, our patients, "Well, was it useful?" I mean, if it's not useful, then why go through all this effort? We've got to develop something that's useful for you. We asked them, "Did this help you better understand or communicate?" And down here at the bottom, the yellow is Very Useful, the dark blue is Useful, and then we had some Not So Useful, I Didn't Do It, and some didn't respond.

We weren't 100% successful, so we still have some work to do, but that's okay, that's what we keep doing, as researchers, right? But we found that the majority of people felt that it did help them better understand their transplant and related treatment; side effects; how to manage their health, transplant and related treatments; communicate with their care providers, that village of providers that it takes to help you stay healthy; the side effects of transplant; not so much in scheduling appointments. I wonder if we asked that one wrong. Should we have asked, "Does it help you know when to schedule an appointment?" because scheduling appointments is heck. Have you ever tried to do that, and tried to coordinate them on the same day, so you don't have to go back and forth so many times?

18:05  Patient comments about personalized survivorship care plan:  Here's some comments I wanted bring forward from people just like you, sitting in the chairs like you're sitting in today, that have been in your shoes. "The care plan was useful because it gave me a list of questions to ask medical providers in one document. Before that, I really didn't know I was at higher risk for certain problems, and what I kind of needed to do." "It got me to go for a mammogram. It pushed me to get that colonoscopy and I had this bigger picture of health, that I'm going to live a long time, so I need take care of myself." And it gave them a lot of confidence.

18:37  Patient survivorship care plan reduces patient stress:  We also found in analysis that we've done later, that one of the number one things that it did is help the patients reduce the amount of distress and anxiety they felt over not knowing what needed to be done. "It gave me the knowledge to let local health providers know what they need to know." "It really supported patients and caregivers." We had patients tell us that they would go to the emergency room and say, "This is what I need to have done" and providers not really not understanding or knowing. This empowered you to say, "Here's what I need to have done. I can dialogue." Caregivers found this to be helpful, as part of your care team - and maybe they're the one with you in the ER  - to help them communicate, as well.

19:18  Survivorship care plan helps patients understand that complications are not unusual:  It supported our patients with emotional help and coping. "The care plan's been helping both me and my husband to read and understand what's going on." I think that [this] was an important comment, to know that certain things are not unusual. "Sometimes if you know that this is okay, that I shouldn't be so frightened or concerned about this, that this is common, I take a deep breath and not to get so bent out of shape, and my husband uses it a lot." "I was blindsided by the emotional aspect of getting cancer. Just ravaged by going through some these thing. And knowing that researchers were aware of the emotional aspects in addition to physical components is very important and validating." Validation. "The plan gave me permission to ask for help. That's one of the biggest things. I didn't want to ask for help."

20:16  Every transplant center should provide a personalized survivorship plan to patients:  We're recommending that every transplant center provide a personalized transplant survivorship plan for all transplant patients. This work has now been written up. This is two manuscripts. One will be focusing on the transplant physicians, care teams, hematologists and oncologists, giving the results of this personalized survivorship care plan study. The other one is focused on what we learned from you. What we learned from our patients, our caregivers, our primary cancer specialists, our primary physicians back in the community. That is really going to entail a lot of what we learned from the patient focus groups, and what you have to say about survivorship.

We know that this can be an issue for transplant centers. They're busy caring for patients who are getting ready to have their transplant, and providing post-transplant care, but we are planning to get this word out.

21:09  What a survivorship care plan should include about the patient’s prior  health issues:  The plan should include the patient’s entire journey through survivorship.  What we're recommending that this plan should include your entire journey as a transplant survivor. Pre-transplant health concerns, even before you had a diagnosis of an immunologic disorder or aplastic anemia, or a blood disorder. Everything that you had around that diagnosis before you even came to a transplant center, all of this type of care, what we call primary care.

We need to know about age and gender and your lifestyle factors, and were you're a smoker, and did you have diabetes since you were ten? We know that patients relate to their family history, and genetic factors may be more prone to certain issues. There's a lot here that the transplant center can fill in. Whether or not you needed medications or graft-versus-host disease. What happened after the transplant those first 28 days if you're an autologous recipient, those post 100 day. And we know then that your lifetime recovery needs close attention.

22:12  What a survivorship care plan should include about the patient’s treatment history:  What should be in that BMT transplant treatment summary? Well, we start with the pre-BMT treatment summary provided by your care provider for primary disease. When you're referred to a treatment center for consultation, we're asking the transplant center to extract that information and maybe they need to be very closely talk with your primary physician, to make sure we understand every piece of care that you've had. Your diagnosis state, all the treatment, your primary treatment, including how many transfusions you may have had. Because how many transfusions of red cells may put you at risk for certain health issues. And what side effects you had during that primary treatment, management, and recovery.

And then the transplant treatment summary. Again, all of your conditioning regimens, whether or not you had radiation, what parts of the body, the type of transplant and date, the stem cell source, the donor gender. This can be very important for looking at things afterwards, in terms of looking for relapsed disease or immune diseases or blood disorders. If you've had an allogeneic transplant, what medications were used to help prevent graft-versus-host disease?

The treatment summary then needs to talk about when did your cells start growing in? When did they engraft? Did you have any growth factor? If you had graft-versus-host disease, what parts of the body are bothering you, and what treatments did you have? If you had infections, which ones? What can you do to help prevent them from coming back? Any other health issues? Did you have some heart dysfunction? Did the kidneys have problems during transplant? What medications? If you left your transplant center, did you have an armload list of medications to take? And many of those are really unique to transplant.

24:02  Community doctors need education about transplant patients’ drugs:      Doctors in the community, they're great doctors, but they're not transplant specialists. And those are medications that have some issues in how to take them. You don't take grapefruit juice when you take it in the morning. You stand up for 30 minutes. And it's just ... Really. You know, right? What side effects can each of them have? And how long are you supposed to take them? Are you supposed to taper off? If you taper, what happens? Those are the things that we need to do a better job of communicating, not only to our patients and caregivers, but we're a team of working with your providers back home.

24:36  Survivorship plan should specify how care will be coordinated:  We want to talk about your long-term follow-up care plan. Who's going to do what and when, is really the simple part of it. Right? Is the doctor back home, are they going to automatically schedule your appointments to be cared for locally? Is that burden on you? Who's coming back to the transplant center, and when? Are they going to do the CAT scans? Gosh, you don't need two CAT scans two weeks apart. Right? Can't they share the data and the information? Who's going to communicate all of that? Do they do the scans at home and send them back to you for your anniversary or special visit? Who's going to be telling you the results? I don't know about you, but I want the results as soon as I walk out of the examining room. There's anxiety associated with all of that. Tell me I'm doing fine. What's going on? Let's have a plan.

25:24  How patients should use their survivorship care plan:  How to use that plan. Refer to it often. Use that as your notebook, your journey for life. Use it to know when to schedule appointments. Take it to all of your visits. I don't know about you, but as I've gotten older, I can't remember things, and for even my hairdresser I get a card, I put it in my iPad, I put it in my phone, I tell my husband, and then I put the card on my desk. It's really hard to know. I can't imagine keeping track of the lung doctor appointment, or the kidney doctor. I'm going to the social worker, or I have physical therapy on Thursday. You have a lot to do, and we need to help you have the tools. Take notes, ask questions, record what was done, so that you have a journey of your health.

26:07  Share your survivorship care plan with your family caregivers:  Share it with your caregivers. We learned through the study that we did, that they [caregivers] really also have a reduction in distress and anxiety if they have a sense of also what needs to be done, and again assist you in that. They can be your extra ears, an extra brain knowing what needs to be done. They may even notice symptoms you don't notice, because you're trying to get used to that new normal, and oftentimes, that new normal isn't how you felt before, and they may notice a change in your health that you don't know.

It's really important for our patient caregivers. They keep track of their children's health. Because that's even an additional issue, as a child after transplant grows into adulthood, the issue that they need to worry about.

26:51  What to do if you never got a survivorship care plan or if your plan is old:  What if you never had a plan, or whether it's old, well my gosh, time to get one. Your transplant center needs to prepare one for you, and not only hand it to you, they need to schedule time to sit down and review it with you. Ask every question that you have. If you've had a survivorship care plan updated, research has really advanced the care. We know now about timing for women who should undergo mammogram, which is much different than it was in the past, based on whether or not you've had radiation. We know more how to best care for patients. Your plan needs to reflect current best evidence in how to keep you healthy.

Is it really that important? Well, I've stood here for half an hour, I came from Minnesota to tell you, "Yeah, I think it is. It is." I want every one of you to be standing here in 30 years, and when Sue asks, "How many are 30 year survivors?" that you're all standing up. All right? You need to know about your long care needs. We all do. we all have a journey through life. We want you to be followed appropriately, and coordination of care is so, so important. And more so, that we can prevent many of these things. All right? Where I told you 50% of patients have long-term health complications, but my gosh, we can prevent those. Let's bring that down. Let's get that down to less than 10%. Let's get down to, you have a transplant and your quality of life is wonderful. That's our goal.

28:17  Summary of presentation:  Take home points. A personalized survivorship care plan is critical to maintaining good health after transplant. I hope that I've convinced you that your transplant team is responsible for helping develop that plan for you. We're doing research to help them. Make it simple for them to take information they've already gathered to personalize it for you. We have National Institute of Health money for another five year study, to take what we learned from the study that I showed you, and expand it, and make it better from what we've learned.

Take it to your appointments. Use it to keep track what needs to be done, by whom, when. To have those conversations, share it with your caregiver. And as the research advances the field, ask them to update it for you.

There's a lot of folks. I'm representing not only a huge number of patients and caregivers, but all of our 17 teams are working together on this. I really want to thank PCORI with their funding. They are patient-centered, and they do wonderful work and we thank them for supporting us in our efforts.

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