Transcription:
Survive and Thrive After Pediatric Cancer

Trisha Williams: Hi guys. Welcome to the second season of the Advanced Practice Perspectives. I'm Trisha Williams.

Tobie O'Brien: And I'm Tobie O'Brien. This is a podcast created by advanced practice providers for advanced practice providers. Our goal is to provide you with education and inspiration. We will be chatting with pediatric experts on timely key topics and giving you an inside look at the various advanced practice roles at Children's Mercy.

Trisha Williams: We are so glad that you're joining us today. So sit back, tune in and let's get started Today, we will be chatting with Wendy Hein. She is a nurse practitioner in Children's Mercy's Survive and Thrive Clinic. Welcome to the podcast, Wendy. We are so happy that you're joining us today.

Wendy Hein: Thank you. I'm glad to be here too.

Trisha Williams: Can you tell our listeners a little bit about your background?

Wendy Hein: Sure. So the majority of my nursing career has been in heme-onc. I was actually a nursing student on 4 Henson and then hired as a bedside nurse. I did leave Children's Mercy for a couple of years to be a travel nurse, and then came back to 4 Henson. After I was back for a little while, there was an opportunity for a nurse coordinator role with the new clinic that had been started for cancer survivors, and that was Survive and Thrive. So I applied for that role and was hired into that role. And at the same time, I started my master's degree. So I still today coordinate the program in addition to being a nurse practitioner. I found a passion in childhood cancer survivorship care, and just really enjoy helping survivors understand their history and what they need to do to stay healthy. I also have been involved in developing and starting the survivorship clinic at KU and that's where some of our survivors transition once they're ready to leave Children's Mercy.

Tobie O'Brien: That is really great. Well, Wendy, tell us about the Survive and thrive clinic. I don't really know a lot about it. So tell us all about it.

Wendy Hein: So Survive and Thrive started in 2009. And I joined the program in 2010 and was told at the time I was hired that my job would be to grow and develop the program, which you don't learn in nursing school. So the survivorship care really has become a a standard today in pediatric oncology, because we know there's a need for clinics dedicated to survivors. They have unique needs different from the kids who are going through their treatment. So when you look around the country at various pediatric cancer centers, a lot of them now incorporate survivorship care into their programs. So we started with around 60 survivors when I joined the program and, today, we're following 450 childhood cancer survivors.

We are a comprehensive clinic, so we're a multidisciplinary clinic. We have my collaborating physician and then myself, a social worker, a nurse navigator who splits her time between our clinic and the clinic at KU and a nutrition assistant. There's evidence-based guidelines that we follow from Children's Oncology Group. And we use those to develop an individualized followup plan for each of our survivors. And we also use that as the basis for all the education that we provide. And then we've developed really strong relationships with endocrinology, cardiology, and developmental and behavioral.

Trisha Williams: That is amazing in a clinic that is very much needed. I read a statistic somewhere that every day 47 children in the United States are diagnosed with cancer. But we all know being in the pediatric field that children are tough and resilient. Are you able to shed a little light on the success and survival rates and the need for this Survive and Thrive Clinic?

Wendy Hein: Sure. So the exciting thing in pediatric oncology is that the overall five-year survival rate now for all pediatric cancers is around 86%. That's a huge change from where we were back in the '70s, '80s, '90s. So today, there's more than 400,000 childhood cancer survivors in the United States. And then, like I mentioned, there are focused survivorship programs now in many of your pediatric cancer centers around the country. And there's actually evidence that shows there's improved knowledge of their health issues and they get more of their recommended followup and they have improved adjustment when they're in a survivorship program.

So our kiddos and our young adults, we go all the way up to the age of 21, so our kiddos and young adults are at risk for what we call late effects. So the other health problems that can show up 10, 20, 30 years after treatment, they can be medical. They can be psychosocial, mental health, so a variety of things that can happen and they're not showing up until later on in life. So if these kids hadn't been prepared, then they don't know what kind of healthcare they should be getting.

And all of their health risks are really determined on the type of cancer they had, how old they were at the time of their diagnosis and what treatment they were given, which is why the individualized followup plans are really important for these kids. Some of our most common late effects that can show up are secondary cancer or a cancer that's different from the first type that they had, heart problems, hormone dysfunction, and infertility are probably some of the top that we can see. And what happens with our kids is basically their bodies age more rapidly because of the treatment that they've been given. So they're going to develop health conditions at an earlier age than the general population.

Tobie O'Brien: Interesting. That is really cool. And so you said that you guys collaborate really closely with cardiology, endocrinology, and you mentioned a third-- oh yeah. Developmental.

Wendy Hein: Developmental. Yes.

Tobie O'Brien: Okay. Yeah. And so the individualized plans, I'm curious. So they meet with you and develop a plan. And so how often would a family and a child meet within the Survive and Thrive Clinic?

Wendy Hein: So we follow our kiddos once a year. So before their first appointment, part of my nurse coordinator side of my job is to create a treatment summary, which essentially is what it sounds like. So it has all the pertinent information about their cancer diagnosis and how they present it. I do include like past medical history, family history, and then it has all of their treatments, including cumulative doses of chemotherapy, radiation, surgery, any known complications that occurred during treatment or that have already shown up after treatment. So that is given to every family on their first visit and it forms the foundation of the followup plan that we create. So from there, I use the Children's Oncology Group Survivorship guidelines to determine what each survivor is at risk for and how we should monitor them.

Trisha Williams: I'm curious, Wendy, are there common sequelae that all cancer survivors have that other providers can try to help address during their clinic visits? So like, say for me, in a subspecialty clinic or their primary care provider, because I know like hematology and oncology are definitely not my specialty, but I do know there's multiple different types of cancers and the sequelae that happen afterwards based on the type of cancers as you had mentioned. But are there common themes within pediatric survivorship of cancers that we can address as other subspecialty or primary care providers?

Wendy Hein: So the big thing, I think, that's important for other providers who meet survivors is to first know their history and know to ask about their medical history. You know, at Children's Mercy, it's pretty easy because we all have access to everyone's notes and the medical record's all there. But when you think about these kiddos encountering healthcare providers outside of Children's Mercy, you need to know to ask the questions and to ask about a medical history. And I think it's important for all providers just to support and encourage patients in the ownership of their medical history. We do that a lot in Survive and Thrive, helping them learn how to talk about their history, what's important to tell a provider about their history and, of course, always encouraging healthy behaviors and asking and discouraging high risk behaviors.

I think, you know, if once you get diagnosed with cancer, there's a risk to have another type of cancer. The risk is usually small, but it's still there. So I think, as healthcare providers, just being vigilant in our physical exams and the questions we ask can tune us into something that might be kind of happening or something that a patient didn't realize was a problem. So I think that's just really important. That's important for all patients, but for our kiddos, knowing their history and understanding that they do have some other health risks, and so a really good physical exam and history is important.

Trisha Williams: Perfect advice, because I think what I'm taking away here is, you know, what we know there's not cookie cutter things that occur that we can say, "Oh yes. You know, every cancer survivor is going to be at risk for this. They're going to be at risk for that." we just have to really know the medical history and then know abnormal exam findings and be able to get them the help that they need if we find those abnormal exam findings.

Wendy Hein: Yes, for sure. You know, I think what's been good about our collaborations is we've been able to educate our partners and the other specialties about the guidelines and the followup care that we provide. And then we've also learned from them. I feel like in survivorship, it's this idea of needing to be a little bit knowledgeable about a lot of different things you can pick up on, what might be happening or know what tests to do.

So a good example is our collaboration with endocrine. That's the one that's been going the longest and we work so closely with them. So I'm very familiar with how to look for, you know, growth deceleration and what labs to order. Whereas they're also familiar with the fact that the kiddos who've had abdominal radiation, they know they need to have their A1c and their lipid panels checked so they can draw those labs and monitor that. So it's just almost this relationship is also going to become one where they really understand those guidelines and we understand enough about what they do to be able to cover and not miss anything with patients. That's the goal.

Tobie O'Brien: Right. For sure.

Trisha Williams: Right. So you've mentioned the need, you know, if they've had a dominal radiation, why they need to check those specific lab markers, can you just kind of say why? You know, we have some listeners that don't specialize or kind of understand the background of why that is, me included. So like, just for example, why would they need to have that checked?

Wendy Hein: Abdominal radiation can affect the pancreas. And so that puts these kids at more risk for abnormal A1c's and getting diagnosed with diabetes. The same thing with, you know, you radiate the belly. You've got those big vessels of the heart that are there and that can put their lipids at risk for being elevated from their treatment. And, of course, we know that once you have elevated cholesterol or even diabetes, then we have risks for heart problems and a lot of our kids have had chemo that can affect their heart. So we want to keep those levels within normal range, because we know that that leads to better outcomes for their heart. Same with blood pressure. A patient who has their blood pressure kept in normal range is less likely to develop heart problems, even if they've had the chemo that could affect their heart.

Tobie O'Brien: Interesting. So you've mentioned a lot about physical needs. I'm curious about the mental health needs of the kids, but also of their parents. And I was curious, I'm sure like the older the child is maybe the focus is more on-- well, probably on both of them. But I was curious if you could speak to a little bit of the mental health of both the child and the parents.

Wendy Hein: Sure. So a social worker is involved in our clinic for a really good reason, because mental health is a thing in our survivors. It's a thing right now for everyone. But having mental health late effects or even just mental health things come up early on after treatment is possible for our patients.

So the first thing I like to always tell people is the majority of our survivors are doing really well off therapy, but they are more likely to deal with severe mental health issues. They're more likely to have increased distress, anxiety, depression. A lot of times, and I've seen this, I've been doing this for 11 years, and a lot of times, you can see symptoms of post-traumatic stress and anxiety. And that actually can interfere with their ability to get followup care. So even just coming back into the clinic can cause a lot of feelings for patients and make it hard for them to be willing to come to clinic. And I've had this happen with patients before where it took a few tries for them to get their appointment made. I actually had a family that really wanted to transition early because, for the mom, coming back was so hard.

So we know that those feelings exist in our survivors, but we know that it can happen in our parents too. And one of the things that I think we've seen through the years is, you know, little things might trigger memories for our patients and anniversaries trigger. I've had patients in on their five-year or their ten-year anniversary and just all the feelings that come with that. And, you know, I've had parents tearing up over that. And it's happy tears and it's a little bit of sad over what their child had to walk through. So we definitely see that in clinic and the social worker is such a key role for our clinic and I couldn't do my job without her.

So we do screen for those and we do try to connect our patients to services. And, you know, sometimes just like anyone with mental health, getting kids connected to mental health is challenging, but that is an important part of what we do in clinic. A lot of validation and a lot of letting our, especially teenagers, know like, "You are not alone because you feel this way. You are not alone because you're scared your cancer's going to come back. You are not alone because you can't relate to your peers because of what you've been through." so we utilize our social worker, but, as providers, we've also had to just really be educated on how to have those conversations as well.

The other thing that falls under our mental health piece are neurocognitive issues, so particularly the survivors of brain tumors are at increased risk to have lower IQ, problems obtaining higher education. They might be more likely to not be able to live independently. And all of these things that come with the neurocognitive piece continue to decline for so many years after treatment's finished, so they have to be followed very closely.

Trisha Williams: We recently had a discussion with one of our teen clinic providers. And we had spoken a lot about, you know, ACEs, the adverse childhood events, and how they have a high impact on mental health and the, you know, development of the brain. And this is an adverse childhood event, like, this is what it is, right? And so, you know, mental health, I can only imagine plays a huge role in what you're doing and for the success of their health. You know, and mental health with the pandemic and everything has been on the forefront of everybody's mind. But is there any plan to have a mental health provider other than the social services, social work that you have to be included into the Survive and Thrive to kind of help alleviate that need to seek outside services?

Wendy Hein: So as of right now, there's not a plan because we do see patients just once a year. And our social worker's time is committed to Survive and Thrive and then also to kiddos who are still on treatment. We've had interns and fellows come through clinic and spend time. We had I believe she was a psychology fellow come to clinic for so many months and spend time in clinic and was able to intervene and do some, you know, in the moment therapy. Our social worker does a really good job of tapping into resources as much as she can.

And then we have, in developmental behavioral, a psychologist, who is our primary referral point for counseling and neurocognitive testing and things like that. And she has such a great understanding of all the different feelings and all the different mental health issues that can come up in our survivors and does a really nice job of navigating that with them. And we've had very good feedback about her. But at this point, we don't have plans to add someone in more often, just because of we only see them once a year. And so it works better to try to connect them to somebody even though that's a challenge right now.

Trisha Williams: Very good point. No, but very good point because they need mental health services more than just once a year, for sure.

Wendy Hein: Right. Yeah, they do.

Tobie O'Brien: That's really interesting. You mentioned that validation of their feelings and, you know, reassuring that they're not alone. Are you involved or are there support groups like within Children's Mercy that you try to connect them with others if they would like to be put into a support group? Or is that something that once you kind of refer them to, the social worker can kind of help them find those sorts of groups?

Wendy Hein: So teens hate the word support group.

Tobie O'Brien: Oh, okay. Well, I, could see that. A lot of times they probably don't like the words that we use, you know?

Wendy Hein: They don't. So if we go back pre COVID, we have a grant-funded program and Leukemia Lymphoma Society helps with it and it was offering quarterly activity for teens to come to. So maybe it was a Royals game or the places that you can go where you can paint and they walk you through the painting or the arcade places. So teens could sign up to come. It was free because it was a grant-funded program. So teens could sign up to come and they would just come and they would do that.

Now, there would be, you know, Children's Mercy staff there. And I did this a few times before the pandemic, I was a chaperone. And if you just sit back and watch them, they start talking about it or they bring it up little bit here and there, and they don't even realize what they're doing, but they're supporting each other. And that had a big impact. Now, of course, COVID has altered everything about how we do everything. So the hope is someday that will come back.

There is a peer match program at Children's Mercy. If you guys have not heard about it, it's called PEEPS. And this is not just for within heme-onc. This actually has expanded outside of heme-onc. But the goal is to match teens with an older young adult who has left Children's Mercy usually, and they can be connected to support each other. And so you could be a teenager and maybe you have body image issues, and you want to talk to somebody who maybe had to walk through that already, so you can be matched. Or maybe you want to talk to somebody who's transitioned out of Children's Mercy successfully to adult healthcare, which we know is a big thing, and you want to talk someone about that. So they can request a match and they can put information in there about what they're looking for in their match. And then all of the peers who are mentors go through training with our social worker and then there's a child life specialist to do training on how to be a mentor. And then after that, they get to connect however they want, which we know text and FaceTime and different things like that are ways teens like to connect. So that is available at Children's Mercy.

And then Stupid Cancer is available for adolescent and young adults. So in the pediatric heme-onc world, AYA is adolescent young adult. Those patients are aged 15 to 40 years old. So Stupid Cancer exists online, but they also do some conferences -- again, pre-COVID -- some conferences and different meetups and provide different opportunities for patients either going through cancer treatment or have finished cancer treatment. And that's another really good resource that we can refer patients.

Trisha Williams: What an amazing resource. And it's always easier to talk to somebody who's walked your path or similar paths, you know. I shouldn't say your path because you can only walk your own path, but similar paths to say, "Okay, they got through this, they got through that door. I can get through that door. I can get through that barrier. They did." So what an amazing resource and opportunity that we have, not only for the adolescent, but for the young adults and the people that have made it through to be able to help. So that's big.

Wendy Hein: Yeah. If there's one thing in survivorship clinic is the majority of our survivors want a way to give back. They almost always say yes to research opportunities. We find that they want to do something to give back. And so it's really neat to see that come out from their experience.

Trisha Williams: That's beautiful. I would like to kind of loop back around to something that you had mentioned earlier about the collaboration with KU and the transitioning of our adult patients and kind of shed some light on what that looks like and really how long do cancer survivors need to be followed in a Survive and Thrive type environment.

Wendy Hein: So that clinic was borne out of a research study that we did early on. When I joined the program, we did a needs assessment of patients from KU and Children's Mercy. And the results from that were just quite astonishing and overwhelming. And that was my first dive into any type of formal research project. And we learned so much from our survivors about what they need and what they didn't have.

So the survivorship clinic, after many after hours working on this, the Survivorship Clinic at KU was started, housed in internal medicine because a lot of the things our survivors are at risk for, internal medicine physicians and family medicine are trained to be able to look for those things. They just need the guidelines and the knowledge. That's what's missing for our adult healthcare providers. So we started the clinic with an internal medicine physician. She has a nurse practitioner who also helps her now part-time and then we have our nurse navigator who spends 50% of her time roughly at Children's Mercy and the other portion of her time coordinating the clinic at KU. So she's me over at KU as a nurse coordinator or nurse navigator. So she helps the patient. She meets them at Children's Mercy, then helps them to take that leap into the healthcare system over there. And again, we know that's overwhelming. So, of course who goes there is dependent on many things and we help patients decide where they best need to get their followup. And it's not always in that clinic. So they don't have to be in a formal survivorship type of clinic. There are really not that many around the country that take care of adults. You'll find pediatric cancer centers keep their patients well into adulthood for survivorship, but you don't necessarily find adult-focused pediatric cancer survivorship in an adult facility. And one thing that a lot of survivors will tell you is eventually they outgrow the pediatric world, the little kids, the colors, the characters, all of that. They outgrow that and they want to feel a little bit more like they're being treated as an adult.

Tobie O'Brien: So, there's not a lot of those clinics. So then it becomes a matter of helping our survivors be really well-versed on their health and how to advocate for themselves and us making sure that records and everything are transferred to that primary care provider.

Trisha Williams: Yeah, I do think that that's one thing Children's Mercy does that I'm sure other children's hospitals do is, you know, really try to help transition our young adults, but also when we are caring for our teenagers and our young adults, we treat them as such, you know. And I think that we do a very good job as I'm sure other institutions throughout the country do. So that collaboration that you have with KU is amazing. So very nice work on the research and the needs assessment to figure out that that's what our patients need and the community needs. So good job on that.

Wendy Hein: Thank you. It was good work that has yielded. That clinic is six years old now, six or seven years old now. So it's been a really good partnership and collaboration with them.

Trisha Williams: Do you feel like that you have statistics or information that shows the success rate of the clinic, meaning that patients are getting, you know, more frequent followup or that these comorbidities are being found or anything like that? Does that question make sense?

Wendy Hein: Yeah, it does. So, Dr. Lowry at KU and then Kyla is the nurse navigator. I think they track their statistics and they have monitored things and they've done a few smaller research projects or quality improvement projects to look at numbers. I don't have that data right in front me.

Trisha Williams: That's okay. No, interesting.

Wendy Hein: Yeah, they have been tracking that. They have survivors that are all the way up into their 60s and 70s, I believe, that they are seeing in their clinic, which that just makes my heart feel very warm, to know that we have survivors that are that old.

Trisha Williams: That's beautiful. Beautiful.

Wendy Hein: It is.

Tobie O'Brien: Thank you so much, Wendy, you have given us so much information about Survive and Thrive. Things I did not know. I did not know about the peer matching. That is so cool. So lots of great information today. It's just been a pleasure.

We like to end each episode with asking our guests the same question. So our question to you today is what is a piece of advice you've heard or read recently that has impacted you?

Wendy Hein: So this is geared towards what I do every day, but I hope that people can maybe apply it to their own practice. Early on, I had a big learning curve. Obviously coming from inpatient and then coming into the survivorship world, I had a big learning curve and I read a quote from Dr. Kevin Oeffinger, who is at Memorial Sloan Kettering, I believe, working with survivorship. And he said the cancer experience is a process that extends throughout a lifetime, a looking glass through which all future health and illness behaviors of the survivor must be interpreted. And that has stuck with me for so many years. And that's what drives how I approach survivorship, how I approach transition, how I approach education of others, is you cannot forget their cancer history when you're looking at these patients, especially when they present with a new healthcare problem or complaint. You have to look through the lens of their cancer history, because it could be something treatment-related.

So I hope people can kind of apply that, especially working with, you know, patients with chronic illness. But, you know, the experiences of our patients and their health are really important to take into consideration when they're presenting to us with new complaints and problems. So that's really driven how I've developed the program and how I practice and care for survivors.

Trisha Williams: You are a compassionate and brilliant human being. So thank you so much for spending your time with us today.

Tobie O'Brien: Thank you guys. I appreciate you inviting me to talk about Survive and Thrive. It's definitely a passion.

Trisha Williams: I can tell. It's brilliant.

Tobie O'Brien: Yeah. Great job.

Wendy Hein: Thank you.

Trisha Williams: Well, listeners, thanks so much for tuning in today. If you have a topic that you'd like to hear more about, or would like to be a guest on our podcast, please email tdobrien@cmh.edu or twilliams@cmh.edu. Once again, thanks for listening to the Advanced Practice Perspectives podcast.