As pediatric cancer survival rates continue to improve, we are faced with a new set of health challenges in caring for these survivors.
Joy Fulbright, MD, Director of the Survive and Thrive program at Children’s Mercy Kansas City, discusses health concerns after cancer treatment, what primary care providers need to know, and the need for yearly screenings addressing medical and psychosocial issue.
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Primary Care for Pediatric Cancer Survivors
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Learn more about Dr. Fulbright
Joy Fulbright, MD
Dr. Fulbright is a board-certified pediatric hematologist/oncologist and is Director of both the Adolescent and Young Adult Program and the Survive and Thrive Program at Children’s Mercy. She also is an assistant professor of pediatrics at the University of Missouri-Kansas City School of Medicine. Dr. Fulbright received her medical degree from the University of Missouri-Columbia School of Medicine. She completed a residency in internal medicine/pediatrics at Good Samaritan Hospital in Phoenix, Ariz. and a fellowship in pediatric hematology/oncology at M.D. Anderson Cancer Center – University of Texas. Dr. Fulbright has special interests in clinical treatment of adolescents and young adults with cancer and research on the late effects of cancer treatment.Learn more about Dr. Fulbright
Transcription:
Primary Care for Pediatric Cancer Survivors
Dr. Michael Smith (Host): Our topic today, is Primary Care for Pediatric Cancer Survivors. My guest is Dr. Joy Fulbright. Dr. Fulbright is the Director of the Adolescent and Young Adult Program and the Survive and Thrive Program at Children’s Mercy. Dr. Fulbright, welcome to the show.
Dr. Joy Fulbright (Guest): Thank you, very much, for having me.
Dr. Smith: This is always a challenge, right? For primary care physicians, for general pediatricians – they have a patient diagnosed with cancer – may he has gone through treatment, maybe in remission, recovery – this is challenging I know, for us. Tell us a little bit about how you approach a patient long-term now who has had cancer.
Dr. Fulbright: Here at Children’s Mercy, we have a specialized clinic that we call Survive and Thrive where we see patients after they’re done completing therapy – usually 2- to 5-years after they’re done with therapy, they start following us in our clinic. What we do is we provide a summary to the patient and to their primary care physician about the treatment that they have received, and also things that need to be followed.
Some examples of that are if a patient received certain medications that can affect the heart, called Anthracycline – or radiation therapy that could affect their heart, we recommend getting echocardiograms or pictures of their heart at certain time intervals. And also, to be more aware that they could have heart issues at a much younger age than you would generally expect a patient to have. That’s just one example, and we really try to educate the patient and the family, but also provide education for the primary care providers in what to follow and what to watch for.
Dr. Smith: In a sense, what you’re doing is providing a guidebook, if you will – a guideline for the primary care physician to follow knowing that there could be some issues based on the chemotherapy – radiation therapy. Beyond that, what other challenges could a primary care physician anticipate if he or she is taking care of a young child now who – thank God, is in remission, but now has many years to grow and develop – what are some other challenges, just in general, do you foresee sometimes?
Dr. Fulbright: I think some of the challenges is that primary care physicians do not get a lot of training on how to care for these patients and what to watch for. I know when I went to medical school, we did not get any training on that, so I think that’s just difficult. And families sometimes are really scared when pt patients have new symptoms that may remind them of the symptoms that they had when the child was first diagnosed. That can be challenging. We have worked with KU Medical Center and the Midwest Cancer Alliance, and have developed Webinars too, for primary care physicians to receive education on this. Those are up and running on CancerSurvivorshipTraining.com. Providers can get CMEs and look at that to help educate them. It is difficult, the new challenges – just the anxiety with transitioning and knowing what can be done and can’t be done for those survivors.
Dr. Smith: Let’s talk a little bit more about the Survive and Thrive Program at Children’s Mercy. I love that name. It’s fantastic. Tell us a little bit more about how that program got started, what exactly you’re doing today, and where do you think this program is going in the future?
Dr. Fulbright: It was started probably about 8-, 9-years ago with a nurse practitioner and one of our oncologists who is not here anymore, and I thankfully, have been able to step in their shoes. It’s a comprehensive clinic to provide the education for patients and families. Patients see a nutritionist, a social worker, a primary physician, myself or the nurse practitioner that I work with, and a nurse navigator to receive an education. A lot of our focus is on providing patients and families with resources for survivors to live a healthy lifestyle. We really focus on that and prevention.
We also focus on transition. It’s really hard for a family who has been here at Children’s Mercy for years to transition to that next step in care – to transition to the adult world. We really try to help them with resources to do that. One of the things that we’ve done is we worked with KU, and we have a survivorship clinic for adults that are survivors of childhood cancer that our patients can be seen at. We have a nurse navigator, Kyla, that they see here in our clinic at Children’s Mercy, and then they see that familiar face over at KU when they transition to that clinic.
A lot of our survivors are young adults and don’t necessarily stay in the Kansas City area – many get jobs or go to school and travel elsewhere – so we also help them get connected with providers in their area and provide them with that education and that treatment summary.
Dr. Smith: Let’s talk a little bit more about that transition period because this is obviously very important. I'm sure the better the transition, the better the outcomes longterm?
Dr. Fulbright: Correct.
Dr. Smith: I’m sure there is even some data on something like that. We know that it’s tough on the physician side of it, right? You’re a primary care physician, and now you’ve got this patient who is a cancer survivor, and there are a lot of challenges there, and you guys are educating the physicians there. What about the patients and their families? What are some of the emotions? What are some of the challenges that they face when they’re now going on to a different level of care?
Dr. Fulbright: I think emotionally, there’s a lot of anxiety with that transition, so we help them by providing support during that time, helping them navigate a new medical system. For parents, it’s hard too when they’ve been such an integral part of their child’s care, and now, their child is transitioning to a different provider and may be moving far away from home. We are that connection for them, and we start talking about this early – by age 15 – so that over time, they can help prepare themselves for that. We help prepare the patient to be able to do that by making sure they know their medications, they know their history; they have tools that they can use when they go out to a new provider. I think that helps relieve that anxiety.
For some of our patients that need continued support or just help with decision making, we help provide them with directions on how to obtain guardianship and other information and tools that they will need. I think by being able to provide the psychosocial support along with the medical support we can really help make that transition easier for everyone.
Dr. Smith: Are there guidelines that you follow to help you maybe understand when a patient and the family is ready for that transition? I’m sure it’s not the same for all patients and all families. How do you make that decision?
Dr. Fulbright: Yeah. What we do is we use a Transition Readiness Tool, which was developed here at CMH, with Dr. Modrcin. We have the family fill it out, and we see what areas they need to work on, and then we help them work on those different areas. And then it depends on the patient's diagnosis and how much treatment they received because some patients receive more intensive therapy that may require more close monitoring. Those patients we want to see somebody that really specializes in long-term care, and then also maybe need an oncologist. We work with them to gauge what their needs are and then where they’re at in being able to obtain the information they need by assessing their transition-readiness at every visit. At least once a year, we try to assess their transition-readiness and what their needs are, and then develop a plan for them that is specific for that patient. If somebody is off of therapy for 10-, 12-years, they may not need as much intensive follow-up with an oncologist and other sub-specialists as somebody who has only been off of therapy for a couple of years. We really try to come up with a plan that’s unique for each patient.
Dr. Smith: It’s personalized, which is obviously, the best way to go. Has it always been like this though? Was there a time when it was just time for you go on to your primary care and that was it? I guess, what I’m asking is a program like Survive and Thrive – is this something that’s being adopted by medical centers throughout the country or is this pretty unique?
Dr. Fulbright: Our program is unique in the sense that we have a partnership with an adult provider who we can transition our patients to, but more and more centers are adopting having a survivorship clinic for their patients. Probably in the last five years, we’ve seen more and more of these clinics develop, but Children’s Mercy has definitely been on the leading edge of developing that and then partnering with an adult center to develop a clinic for the adult patients to transition to. We’ve been really fortunate to have that partnership.
We follow guidelines based on the Children’s Oncology Group as far as guidelines to follow what screening tests that we need to do for each patient. And then the American Society of Clinical Oncologists or ASCO has really been pushing for patients to have treatment summaries and to make sure that long-term follow-up is in place for them.
Dr. Smith: Dr. Fulbright, in summary, what would you like primary care physicians to know about taking care of pediatric cancer survivors?
Dr. Fulbright: I think what’s important is if you have questions, feel free to reach out to us here at Children’s Mercy, at our Survivorship Clinic, and that it’s just really important to listen to families. If you do not have a treatment summary or guidelines on how to follow these patients, please reach out to us because if they have been seen here, we can help provide that for them. If they have been seen elsewhere at another facility, we can really help you try to gather that information, or if we don’t have it, based on their diagnosis, can help give you information what to follow. They have unique needs that some of your other patients may not have as far as risks of developing secondary cancers or heart failure or other issues at an earlier age that some of your other patients wouldn’t have. Prevention is probably the most important thing, making sure they get their vaccines and have their blood pressure checked and led a healthy lifestyle.
Dr. Smith: Dr. Fulbright, I want to thank you for the work that you’re doing. It’s essential, and I wish you much success. I also want to thank you for coming on the show today. You're listening to Pediatrics In Practice with Children's Mercy Kansas City. For more information, you can go to ChildrensMercy.org, that's ChildrensMercy.org. I’m Dr. Mike Smith. Thanks for listening.
Primary Care for Pediatric Cancer Survivors
Dr. Michael Smith (Host): Our topic today, is Primary Care for Pediatric Cancer Survivors. My guest is Dr. Joy Fulbright. Dr. Fulbright is the Director of the Adolescent and Young Adult Program and the Survive and Thrive Program at Children’s Mercy. Dr. Fulbright, welcome to the show.
Dr. Joy Fulbright (Guest): Thank you, very much, for having me.
Dr. Smith: This is always a challenge, right? For primary care physicians, for general pediatricians – they have a patient diagnosed with cancer – may he has gone through treatment, maybe in remission, recovery – this is challenging I know, for us. Tell us a little bit about how you approach a patient long-term now who has had cancer.
Dr. Fulbright: Here at Children’s Mercy, we have a specialized clinic that we call Survive and Thrive where we see patients after they’re done completing therapy – usually 2- to 5-years after they’re done with therapy, they start following us in our clinic. What we do is we provide a summary to the patient and to their primary care physician about the treatment that they have received, and also things that need to be followed.
Some examples of that are if a patient received certain medications that can affect the heart, called Anthracycline – or radiation therapy that could affect their heart, we recommend getting echocardiograms or pictures of their heart at certain time intervals. And also, to be more aware that they could have heart issues at a much younger age than you would generally expect a patient to have. That’s just one example, and we really try to educate the patient and the family, but also provide education for the primary care providers in what to follow and what to watch for.
Dr. Smith: In a sense, what you’re doing is providing a guidebook, if you will – a guideline for the primary care physician to follow knowing that there could be some issues based on the chemotherapy – radiation therapy. Beyond that, what other challenges could a primary care physician anticipate if he or she is taking care of a young child now who – thank God, is in remission, but now has many years to grow and develop – what are some other challenges, just in general, do you foresee sometimes?
Dr. Fulbright: I think some of the challenges is that primary care physicians do not get a lot of training on how to care for these patients and what to watch for. I know when I went to medical school, we did not get any training on that, so I think that’s just difficult. And families sometimes are really scared when pt patients have new symptoms that may remind them of the symptoms that they had when the child was first diagnosed. That can be challenging. We have worked with KU Medical Center and the Midwest Cancer Alliance, and have developed Webinars too, for primary care physicians to receive education on this. Those are up and running on CancerSurvivorshipTraining.com. Providers can get CMEs and look at that to help educate them. It is difficult, the new challenges – just the anxiety with transitioning and knowing what can be done and can’t be done for those survivors.
Dr. Smith: Let’s talk a little bit more about the Survive and Thrive Program at Children’s Mercy. I love that name. It’s fantastic. Tell us a little bit more about how that program got started, what exactly you’re doing today, and where do you think this program is going in the future?
Dr. Fulbright: It was started probably about 8-, 9-years ago with a nurse practitioner and one of our oncologists who is not here anymore, and I thankfully, have been able to step in their shoes. It’s a comprehensive clinic to provide the education for patients and families. Patients see a nutritionist, a social worker, a primary physician, myself or the nurse practitioner that I work with, and a nurse navigator to receive an education. A lot of our focus is on providing patients and families with resources for survivors to live a healthy lifestyle. We really focus on that and prevention.
We also focus on transition. It’s really hard for a family who has been here at Children’s Mercy for years to transition to that next step in care – to transition to the adult world. We really try to help them with resources to do that. One of the things that we’ve done is we worked with KU, and we have a survivorship clinic for adults that are survivors of childhood cancer that our patients can be seen at. We have a nurse navigator, Kyla, that they see here in our clinic at Children’s Mercy, and then they see that familiar face over at KU when they transition to that clinic.
A lot of our survivors are young adults and don’t necessarily stay in the Kansas City area – many get jobs or go to school and travel elsewhere – so we also help them get connected with providers in their area and provide them with that education and that treatment summary.
Dr. Smith: Let’s talk a little bit more about that transition period because this is obviously very important. I'm sure the better the transition, the better the outcomes longterm?
Dr. Fulbright: Correct.
Dr. Smith: I’m sure there is even some data on something like that. We know that it’s tough on the physician side of it, right? You’re a primary care physician, and now you’ve got this patient who is a cancer survivor, and there are a lot of challenges there, and you guys are educating the physicians there. What about the patients and their families? What are some of the emotions? What are some of the challenges that they face when they’re now going on to a different level of care?
Dr. Fulbright: I think emotionally, there’s a lot of anxiety with that transition, so we help them by providing support during that time, helping them navigate a new medical system. For parents, it’s hard too when they’ve been such an integral part of their child’s care, and now, their child is transitioning to a different provider and may be moving far away from home. We are that connection for them, and we start talking about this early – by age 15 – so that over time, they can help prepare themselves for that. We help prepare the patient to be able to do that by making sure they know their medications, they know their history; they have tools that they can use when they go out to a new provider. I think that helps relieve that anxiety.
For some of our patients that need continued support or just help with decision making, we help provide them with directions on how to obtain guardianship and other information and tools that they will need. I think by being able to provide the psychosocial support along with the medical support we can really help make that transition easier for everyone.
Dr. Smith: Are there guidelines that you follow to help you maybe understand when a patient and the family is ready for that transition? I’m sure it’s not the same for all patients and all families. How do you make that decision?
Dr. Fulbright: Yeah. What we do is we use a Transition Readiness Tool, which was developed here at CMH, with Dr. Modrcin. We have the family fill it out, and we see what areas they need to work on, and then we help them work on those different areas. And then it depends on the patient's diagnosis and how much treatment they received because some patients receive more intensive therapy that may require more close monitoring. Those patients we want to see somebody that really specializes in long-term care, and then also maybe need an oncologist. We work with them to gauge what their needs are and then where they’re at in being able to obtain the information they need by assessing their transition-readiness at every visit. At least once a year, we try to assess their transition-readiness and what their needs are, and then develop a plan for them that is specific for that patient. If somebody is off of therapy for 10-, 12-years, they may not need as much intensive follow-up with an oncologist and other sub-specialists as somebody who has only been off of therapy for a couple of years. We really try to come up with a plan that’s unique for each patient.
Dr. Smith: It’s personalized, which is obviously, the best way to go. Has it always been like this though? Was there a time when it was just time for you go on to your primary care and that was it? I guess, what I’m asking is a program like Survive and Thrive – is this something that’s being adopted by medical centers throughout the country or is this pretty unique?
Dr. Fulbright: Our program is unique in the sense that we have a partnership with an adult provider who we can transition our patients to, but more and more centers are adopting having a survivorship clinic for their patients. Probably in the last five years, we’ve seen more and more of these clinics develop, but Children’s Mercy has definitely been on the leading edge of developing that and then partnering with an adult center to develop a clinic for the adult patients to transition to. We’ve been really fortunate to have that partnership.
We follow guidelines based on the Children’s Oncology Group as far as guidelines to follow what screening tests that we need to do for each patient. And then the American Society of Clinical Oncologists or ASCO has really been pushing for patients to have treatment summaries and to make sure that long-term follow-up is in place for them.
Dr. Smith: Dr. Fulbright, in summary, what would you like primary care physicians to know about taking care of pediatric cancer survivors?
Dr. Fulbright: I think what’s important is if you have questions, feel free to reach out to us here at Children’s Mercy, at our Survivorship Clinic, and that it’s just really important to listen to families. If you do not have a treatment summary or guidelines on how to follow these patients, please reach out to us because if they have been seen here, we can help provide that for them. If they have been seen elsewhere at another facility, we can really help you try to gather that information, or if we don’t have it, based on their diagnosis, can help give you information what to follow. They have unique needs that some of your other patients may not have as far as risks of developing secondary cancers or heart failure or other issues at an earlier age that some of your other patients wouldn’t have. Prevention is probably the most important thing, making sure they get their vaccines and have their blood pressure checked and led a healthy lifestyle.
Dr. Smith: Dr. Fulbright, I want to thank you for the work that you’re doing. It’s essential, and I wish you much success. I also want to thank you for coming on the show today. You're listening to Pediatrics In Practice with Children's Mercy Kansas City. For more information, you can go to ChildrensMercy.org, that's ChildrensMercy.org. I’m Dr. Mike Smith. Thanks for listening.