Rob Steele, MD (Host): Welcome to Pediatrics in Practice, a CME podcast. I'm your host, Dr. Rob Steele, Executive Vice President and Chief Strategy and Innovation Officer at Children's Mercy Kansas City. Before we introduce our guest, I wanted to remind you to claim your CME credits after listening to today's episode. You can do so by visiting cmkc. link/cmepodcast,

and then click the claim CME button. Today, we are joined by Dr. Joy Fulbright to talk about caring for pediatric cancer survivors in the primary care setting. Dr. Fulbright has been practicing at Children's Mercy since 2010 after graduating the Pediatric Hematology Oncology Fellowship from MD Anderson Cancer Center.

She serves as the Director of the Adolescent Young Adult Cancer Program and the Survivorship Program at Children's Mercy. Dr. Fulbright also began the Fertility Preservation Program, which has expanded to provide services across the whole hospital. She has also served as the chair of the Children's Oncology Group Cardiovascular Late Effects Task Force and has helped write the late effect guidelines, the last two updates. Dr. Fulbright, thank you for joining us today.

Joy Fulbright, MD: Thank you for having me. I appreciate the opportunity to discuss the late effects. And, cause these are patients that you will see in your primary care setting.

Host: Very good. Well, I'll tell you, Dr. Fulbright, as I was preparing for this podcast, I know you've got a number of littles at home and some of the fun things are going to find new playgrounds is what I heard. I have to ask before we jump into cancer survivorship is, what is the requirement for a good new playground?

Joy Fulbright, MD: If you ask my kids a really fun, tall slide and awesome swing.

Host: You know, I'm with you there. You know, that's fairly basic. You can't go wrong as long as you have those, but, obviously that's got to be a requirement for any decent playground. I appreciate that. Let's jump right on into it. So, when we think about pediatric cancer survivors, a lot of times, particularly the lay public, will think about surviving that first month, that first six months, that first year, and we don't hear necessarily a lot in the lay press and whatnot, about late effects and survivorship, long term. So can you discuss a little bit about those late effects, those common ones that you see in pediatric cancer survivors?

Joy Fulbright, MD: While they can be both physical and mental late effects from therapy, it really depends on what therapy you've received. But some of the more common ones that we monitor for are, endocrine side effects, especially in our brain tumor patients that have received whole brain radiation. A lot of those patients can end up with hypothyroidism, growth hormone deficiencies, and need lifelong monitoring and supplementation.

The scary one, especially for our survivors, are secondary malignancies, because unfortunately, the therapies we give can also cause cancer, especially radiation or high doses of medicines we call alkylating agents. So our patients, we really talk to them about guidelines for screening and to make sure that they're screened and do everything they can to prevent secondary malignancies.

Fortunately, this number isn't huge, but it is a very scary side effect for families. We recommend the HPV vaccine. We recommend that for anyone in the population, but especially our cancer survivors, because this can greatly reduce your risk for cervical cancer and head and neck oral cancers. One statistic said that if everyone got the HPV vaccine, we'd prevent 29,000 cancers a year, which could fill like a baseball stadium.

So really recommend that. Another area we really monitor for is cognition. So after leukemia therapy, where they get a lot of intrathecal medicines, medicines injected right into that spinal fluid, or patients that have received whole brain radiation, they can have issues with cognitions and learning. It could be global if you had whole brain radiation, or it could be more focal in specific learning disabilities or memory issues if you had leukemia therapy.

And the more we're learning, we're learning that other therapies can also affect patients' cognition long term. So especially in kids where their brains are developing and they're learning, that's something we really monitor for too. The heart is an area that I have a specific focus and interest in. And patients have gotten chest radiation or a medicine that we call anthracycline.

Some people call this the red devil. So like doxorubicin or donorubicin are some of the common anthracyclines we use in pediatrics. Those patients have to have lifelong monitoring of their heart. So those are just some of the side effects we watch for, but chemotherapy, radiation therapy can affect any organ of a patient.

So it really depends on what therapy they've received, the doses that they've received, and also the age they received them at. And so all this information is important for us to know when we are deciding how to monitor our patient.

Host: Yeah, great. You've done a really nice job of going through the litany of a number of side effects and long term effects, that one can be monitoring. Really, two questions. One is, how common is this? Is it more likely to have long lasting effects or less likely?

And then the second part is, I noticed in your answer, a lot of what you said was we look for this and, we are it's clearly a team. So, for the primary care pediatricians that are listening to this, what are the things that they should really be coordinating? What are the things that they should really be taking charge of and looking for? And, how do you coordinate that care with the primary care pediatrician?

Joy Fulbright, MD: In our survivorship clinic, we see our patients once a year and we do that monitoring, but what's really important is for the pediatrician to do those very thorough well child checks because they're super important and we don't always in our survivorship clinic look at all of those things. So, if you notice abnormal growth, or something that just doesn't quite fit, that's important to contact us with, or if you have any questions or concerns. We want to make sure the primary care provider has a treatment summary, so they know what medications and things they received, but also we like to give them a summary of what late effects to monitor for, so they know what we're watching for.

And we spend a lot of time educating the families, because really, the families are really key to this, because patients move, they go other places. And they're the ones that are taking care of their child every day and need to be aware of what to watch for. Fortunately, in the pediatric side, most of the late effects are either acute, so we've noticed them and are monitoring for them. Or they're not going to occur really until they're seeing an adult provider. So what's really important is that time of transition while patients are going on to seeing adult primary care providers and we really want to make sure they're connected to a primary care provider that knows them. So if the pediatricians can also help the families identify an adult primary care doctor that they feel comfortable with and that can provide that care is really important also.

Host: Yeah, that's really great pearls of advice. You've gone through a number of the cardiovascular, endocrine effects. What about more emotional or psychological effects? Clearly, they've gone through significant trauma, just from diagnosis, therapy, all the therapeutic interventions and the side effects of those. So can you talk a little bit about the late effects with regard to the emotional side?

Joy Fulbright, MD: That is very important. In our survivorship clinic, we have a social worker that meets with the families and we screen for those emotional side effects because that is key that people are aware that some patients have post traumatic stress disorders, that PTSD from the therapy and coming to get therapy.

Some of our patients, it's really hard for them to come back to clinic because it's anxiety provoking. They just want to avoid medical providers altogether, so that's something to be aware of. So we do have patients that we aren't seeing our survivorship clinic that you may see in primary care, so it's important that if you notice that to try to get them reconnected to our services, or if they're not willing to contact us, we're more than willing to send you a treatment summary, talk to you about what needs to be monitored for if they just really don't want to come back and see us in the oncology setting.

We also screen our patients for depression, anxiety. Those are fairly common things in the general population, but our patients are a little bit higher risk for those, and especially some of our patients have what we call survivor's guilt. And so that's really important for us to address, because a lot of them go to camps, and some of their friends they make at camp don't come back the next year, and that's really hard for them too.

Host: Yeah, wow. So, there's a learning for me there. I hadn't thought about that. They're going to make those relationships throughout childhood and some of which are not going to last due to, the surviving of their friends. And so, boy, very important point for us as clinicians to keep in mind. You've mentioned some of the things to look for, and that's all very, helpful, but, I imagine there are guidelines.

I know the Children's Oncology Group have guidelines with respect to, how to monitor. How would the primary care pediatrician access this? How should they use those guidelines, if at all, and are there other sort of, guidelines or educational pieces that the primary care physician should tap into as those children are being followed.

Joy Fulbright, MD: You are correct. There are the Children's Oncology Late Effect Guidelines. You do not have to be part of the Children's Oncology group. Anyone can access them online if you just Google COG Late Effect Guidelines. You can find the link to them. There's also really important education materials called Healthy Links that explain the late effects and side effects in plain language for families.

I use them to educate all of our patients and I've used them to educate myself and residents about some of these late effects that you may not think about, especially dental. Like, that's something I really didn't think about until my survivorship clinic, that these patients who get chemotherapy at a really young age, that affects those developing teeth, because chemotherapy affects fast growing cells.

And so a lot of them have dental issues that you wouldn't think about. So that's a really good resource. There's also the International Harmonization Group Guidelines. And so we're taking those guidelines from Europe, and from other places, and we're working together internationally to form more cohesive guidelines for patients and families.

So that's a good resource. But if you do have a patient that's a cancer survivor and you don't have a summary, always feel free to reach out to us in our survivorship clinic. And we're more than willing to help you get a treatment summary and learn what guidelines to follow because I will admit the guidelines are pretty overwhelming.

It's 240 some pages of guidelines and sorting through those is challenging for a primary care provider. And so what we do is there's something called Passport For Care. It's run out of Baylor, and what we do is we enter all of our patient's summary of their treatment into that, and then that pulls out what guidelines we need to follow so we don't have to go through those 240 pages every time we see a patient.

That's very helpful. When our patients are 18, we get them access to that, so as they transition to other providers throughout the country, as you know, adolescent young adults don't just stay in one place, they move often. They have access to that, so they can pull up those records and give them to our provider.

We used to just have to hand them papers, and we really had families that literally put them in safe boxes so they wouldn't get lost. And so I think this is a much more efficient way for patients and families to have access to this information.

Host: Great use of technology for that. That's for sure. It's interesting you bring up the guidelines. You know, as we think about those children with newly diagnosed pediatric cancer and they're often significant studies and protocols in which they get enrolled which has largely driven the really high success rates that we've seen with pediatric 20 to 30 years.

I'm curious, for those late effects, are there similar studies like that? Are there similar protocols that they get enrolled in or they're really just guidelines that you follow?

Joy Fulbright, MD: We are working more and more about really trying to follow our patients long term, and so we have some what we call late effect umbrella studies, which our patients enroll on, and then we try to capture them as they transition to adulthood to keep them enrolled to follow them.

There was a large study called the CCSS study, which enrolled a very large portion of our patients that we have followed over the last 30, 40 years, but those patients were treated on an older protocol, so now we're really trying to look at a new group of patients. St. Jude's has a very large, lifetime study where they're able because of all their philanthropic support to bring back patients and study them, and follow them in that clinic.

So we get data from there. The Europeans also are able to really add to our data and follow patients because of their medical system where they capture everyone in universal health care. So they have one large EMR, so they're really able to capture data and follow our patients. So the Dutch and European groups have some really good robust data that we're able to use to look at patients and see what late effects we need to monitor for.

As we get more and more information, our guidelines change. So, over the last two iterations, we've really changed our guidelines to try to make them more user friendly in the sense that a lot of times when you see a patient, you don't know how much radiation they got. So we've just made it, if you've got radiation to this area; you need these extra screenings, to try to make them more user friendly and also not over screen as much. We don't wanna have patients keep getting studies that don't really need them. So we've really tried to tailor those every five years as a cycle, as we get more literature and information.

Host: You've mentioned a number of times about transitioning those pediatric patients into the adult care. You know, I think back to, coming out of residency and, practice, the children with cystic fibrosis, big changes there. And you see a lot of those children that are surviving far into adulthood.

Same with congenital heart defects and they're moving forward. There's a learning curve to that, right? For the adult clinicians, where do you feel we are in healthcare now in making that transition? Are the adult cancer physicians, are those oncologists very comfortable or how's that working for them?

Joy Fulbright, MD: So in Kansas City, we're very fortunate to partner with KU with a internal medicine pediatric provider, Dr. Lowry. And we have a clinic over at KU where she and Kyla Alman is a nurse navigator. She works here at Children's Mercy and at KU. So the patients are familiar with her, so if they're able to, and they live in the area, that's a great resource for our patients so they can have that continued follow up.

Generally, if our patients are over 5 years off of therapy, we'll transition them more to primary care doctors. The adult oncologists are excellent, but they are very full in their practice with adult patients and taking care of those patients on therapy and right after therapy. So our survivors that are older, we really try to work to transition them into primary care and ideally especially if they have a lot of things that need to be monitored for into our late effects clinic with Dr. Lowry over at KU. But I think we're getting better at it. We are trying really to spread the word and educate our primary care providers. They have a lot they have to take care of, so we really focus also on educating the patients and the families and making sure they are advocates for themselves to make sure they get the care that they, they need.

Host: Very good. Well, Dr. Fulbright, thank you so much for joining us. We've learned a ton in such a short time, in this very important topic. So we really appreciate you joining us today. As a reminder, claim your CME credit for listening to our show today. Visit cmkc.link/CMEpodcast, and then click the claim CME button. Dr. Fulbright, before I let you go, I got to know. Okay. So you're at the new playground. You've got the tall slide. You've got the swings. Are you getting on the tall slide? You going down with your kids? Are you actually swinging on the swings?

Joy Fulbright, MD: I have a three year old and a two year old. So yes, I am going down the slides. I don't get to go on the swings very often. They decided not to push me on them.

Host: Okay. Very good. All right. Well, this has been another episode of Pediatrics in Practice, a CME

Rob Steele, MD (Host): CME

Host: podcast. I'm Dr. Rob Steele. See you next time.