Mental Health of Children and Teens with Cancer

Podcast Transcript

Dale Shepard, MD, PhD: Cancer Advances, a Cleveland Clinic podcast for medical professionals, exploring the latest innovative research and clinical advances in the field of oncology. Thank you for joining us for another episode of Cancer Advances. I'm your host, Dr. Dale Shepard, a medical oncologist here at Cleveland Clinic, overseeing our Taussig Phase One and Sarcoma Programs. Today, I'm happy to be joined by Dr. Kate Eshelman, a pediatric psychologist at the Center for Pediatric Behavioral Health at Cleveland Clinic Children's. She's here today to talk to us about the mental health of children and teens with cancer. So welcome, Kate.

Kate Eshleman, PsyD: Great. Thank you for having me.

Dale Shepard, MD, PhD: So, give us a little idea, what do you do here at Cleveland Clinic?

Kate Eshleman, PsyD: So, I'm a pediatric psychologist, which means that I work with children, adolescents, young adults and their families, that have a medical diagnosis. And I'm the psychologist for our Peds Hematology Oncology program. So here, for us, from an oncology perspective, anytime we have a new diagnosis, or somebody that is new to us, so they've been treated somewhere else and come to us for care, pediatric psychology is a routine consult. So, we meet all of these families that come through.

Dale Shepard, MD, PhD: So that's good. So, this is, everyone through the door gets an assessment, which is different than on the adult side.

Kate Eshleman, PsyD: That's right.

Dale Shepard, MD, PhD: So that's good.

Kate Eshleman, PsyD: Yep.

Dale Shepard, MD, PhD: And you mentioned everyone coming through the program. So does that mean BMT and liquids and solids.

Kate Eshleman, PsyD: That's right.

Dale Shepard, MD, PhD: Okay.

Kate Eshleman, PsyD: Every oncology diagnosis, and in particular with BMT, we are part of the psychosocial evaluation prior to transplant.

Dale Shepard, MD, PhD: Gotcha. So, tell us a little bit about the biggest issues that you think come about with children, teens, facing cancer. I'm guessing there might be different issues for each of those groups.

Kate Eshleman, PsyD: That's right. It really varies a lot based on age, and then the type of diagnosis and related treatment. So, for young kids, they really don't have the ability to understand what is happening to them and why. Also, developmentally, there's a lot of separation concerns and that sort of thing. Little kids are looking to build their independence and autonomy, and by nature of treatment, we take a lot of that away. And so, those are some of the things that little kids face.

Older kids are also looking to develop their independence and autonomy in a different way, separating from the home a little bit more, and really the importance of peers, and that is very disrupted. We pull the kids out of school, out of their social activities, and so those things are distressing to kids and families. And then, there's things like pain, nausea, symptom management, that sort of thing. So, it really varies by age, diagnosis, and treatment.

Dale Shepard, MD, PhD: And when we think about doing the assessments and treatments, I'm guessing that varies dramatically based on age.

Kate Eshleman, PsyD: It does. And we ask a lot of the same questions depending on age, but a lot of the interventions that we're going to provide are different based on age. The other thing is, we look a lot at what was functioning of both the child and the family before diagnosis. In psychology, we say, "The best predictor of future behavior is past behavior." And so, if there are any concerns with mood, behavior, adherence, that sort of thing, that's probably going to impact current care, so we want to be mindful of that as well.

Dale Shepard, MD, PhD: Excellent. And when we think about the impacts of cancer on children's families, does it tend to be more the tumor itself? Does it tend to be the uncertainty about the tumor, the treatments? A little of all of it?

Kate Eshleman, PsyD: Yes. A little bit of all of it because, again, depending on the nature of the diagnosis, so for a solid tumor we might be looking at major surgery, potentially amputation, that sort of thing, which is going to impact a child in a certain way. Alternatively, if it's more of a blood cancer, the treatment tends to be a little bit longer. And while it eases over time and decreased time in the clinic and that sort of thing, it's just a longer treatment. So, it's pretty variable, depending on the diagnosis.

Dale Shepard, MD, PhD: And when you talk about the child with cancer, the family, the parents, how do you approach things like the parents, and what sort of resources are available for the parents?

Kate Eshleman, PsyD: Absolutely. And we really do say we're not just here for the child. The child is certainly diagnosed with cancer, but the whole family goes through it. So, all of the resources that are available to the kids are also available to the families. We've actually developed what we call our, sibling outreach program, so that's both supportive and therapeutic, as well as educational and supportive interventions meant for the siblings as well.

And we really are fortunate to have a robust psychosocial program here. So, in the R building up on the second floor, every Wednesday, there's a sibling expression art group. There's another one that happens over at the Children's Hospital for rehabilitation. Both of those are for any kind of diagnosis, it doesn't have to be oncology. But we do have a lot of support available here through the clinic. And then, we're also partnered with community agencies like The Gathering Place, Leukemia and Lymphoma Society, A Special Wish. So, a lot of resources are able to support the whole family.

Dale Shepard, MD, PhD: And I ask, because I'm not certain, how unique is that to be here at the clinic? So, I know on the adult side, lots of focus on the patients, we've gotten better at caregiver support. Is that family and parent support, is that universal or is that something we've developed in a more special way?

Kate Eshleman, PsyD: I think probably a little bit of both. I think that we'd like to think it's universal, but we're consistently hearing stories from families that have come from elsewhere where they haven't had access to psychology or referrals in the community. And so, I think that we are fortunate to have our programming, and I think the hope is that it's that way in other places. There are now published psychosocial standards of care in pediatric oncology, and so I think that has been a great guide for programs in terms of how to develop their supportive programming for families. So hopefully over time, everyone can develop that.

Dale Shepard, MD, PhD: And so, it's great to know that you guys are looking at patients upfront and starting from the beginning, but are there any things that people might be listening to that physicians might need to be mindful of and keep an eye on? So even though someone's seen it, like, I'm seeing this, what are those red flags?

Kate Eshleman, PsyD: Well, I think before maybe specifically mentioning red flags, even thinking about that there is a typical adjustment. So even caregivers that have been doing this for years and years, they'll come to me in distress because somebody's crying. Well, of course they're crying. This is really a big deal in somebody's life. And so, I think to have some reaction, I always tell families that it's not the reaction. Anything you're thinking or feeling is not abnormal, it's the situation that's abnormal. And so, there's some level of a typical reaction or something that's not unexpected. So, I want people to be mindful of that as well.

But then, when you really see very intense distress, maybe beyond what one would think, or very prolonged, everyone has a bad day now then, but if it turns into a bad few days, a bad week, a bad few weeks, and is disruptive to functioning. So that's what we really keep in mind too, looking at interference in things that kids or families either want to do, so they're no longer engaging in enjoyable activities, or they're unable or unwilling to do the things that they need to do.

We talk a lot about maintaining expectations of kids as they're going through treatment. Those expectations might change a little bit, but we still want to have expectations for contributions around the house and schoolwork and the way that we treat others and that sort of thing. And so, if you really see impairment or disruptive disruption and functioning of things that kids want to do or need to do, that would be a red flag.

Dale Shepard, MD, PhD: And is there a similar guidance that you give to families in terms of how to keep an eye on their kids?

Kate Eshleman, PsyD: Absolutely, yeah. And we talk a lot through this, and we see them so often. It's very rare that we meet people up front, and then they're either admitted for a fair amount of time or they're coming back to clinic regularly, so they have a lot of eyes on them. And I think that's important for parents to know, they aren't expected to go through this alone. There's a lot of, whether it's their primary oncologist or their nurse practitioner or care coordinator or psychologist, child life specialist, social worker, there's a lot of eyes on the patients and their families, and to call on those for support. Also, oftentimes, when families come in, hopefully they have an established relationship with their pediatrician, and that's a trusted source. So, reaching out to that trusted source is a great idea as well.

Dale Shepard, MD, PhD: Which in this patient population is probably very helpful, because oftentimes, I'm seeing patients who haven't seen a primary care for years.

Kate Eshleman, PsyD: Right.

Dale Shepard, MD, PhD: So that could be certainly helpful. So, one of the things that's always a problem on the adult side is, unfortunately, mental health issues with patients with cancer is a huge problem, but there's still a stigma associated with it. And so, do you find that that's the case in children's side, or they may be a little more accepting of help?

Kate Eshleman, PsyD: I think that they're probably a little more accepting of help because we are a routine diagnosis. And I tell families that upfront, we're introduced as part of the team, its routine multidisciplinary care, and I think that's a benefit over getting consulted as needed, because I think families can be a little reluctant if they feel that we have been asked to come in because there's a problem. But I'm not able to do this often, but sometimes, just rounding with the team so I'm a familiar face. I'm often documenting at the nurse's station, so when they come out to ask for a cup of ice, they see my face. And so, I'm kind of just always present, and I think that makes it more acceptable.

Dale Shepard, MD, PhD: What does it look like in terms of transitions? You have patients who get treated, particularly patients with long-term issues, treated in a pediatric setting, and then they transition more to adult settings. Do you maintain contact, or do you refer to people? What does that look like?

Kate Eshleman, PsyD: Sure, I smile because transition is a thing that, broadly throughout pediatrics, that everyone continues to work on. But here at Cleveland Clinic Children's, we actually have a Survivorship Program. So, patients that have been off therapy for a long time for childhood cancer continue to be seen in pediatrics through the Survivorship Program. And so, again, I think as part of that, the established psychosocial standards of care, we are really looking and working on checking in at those time points, because when things are better, people tend to fade away, and then sometimes, we miss if things or when things get worse again. And so, we're working to establish those check-in time points. But even through the Survivorship Program, we have questionnaires that are hopefully filled out in advance of those appointments, and then Dr. Rozel would reach out to me, and we figure out where to go from there.

Dale Shepard, MD, PhD: Certainly, long-term issues like fear of recurrence are really, really big in my patient population. I guess you would have two patients, if you will, because that might be an issue with the children, but also with the families.

Kate Eshleman, PsyD: That's right. And oftentimes, kids come in with relatively benign symptoms, pain or a fever, things that most kids get, and most of the time, it's not cancer. And so, how do families adjust back to that life of, what do I do if a child has a fever? And is this the beginning of the end? Or are we back at it again? And so, really working to acknowledge and normalize those experiences, and continue living with them.

Dale Shepard, MD, PhD: So, you mentioned before about things like support groups and things. So, what are some examples? You mentioned the therapy that happens within the building. What are some of the other support things that are done, what you mentioned gather in place, what other resources, give us a little idea what exactly that looks like.

Kate Eshleman, PsyD: Sure. And it's a little bit different, a little bit different all the time, and I think that the key is, and what we really see a lot in pediatrics, is that people and families don't necessarily want to be here more than they must be. And so, I think that one thing that evolved with the pandemic is options for virtual support groups or our educational events, that sort of thing. And so, it varies by timeline and families that are interested. But again, we're working to develop our adolescent young adult support groups and The Gathering Place has recently started a parent support group, it's virtual, so it's kind of just depends. I think maybe just one thing for people to know too is that, for the most part, kids do well.

Dale Shepard, MD, PhD: Yeah.

Kate Eshleman, PsyD: That kids are resilient, and so, most of the time the kids get through this and go on to live happy, healthy lives. And so, to provide some reassurance to parents for that as well. And especially when you have these resources and utilize them, we're going to increase that chance, and so don't be afraid to be open to the resources.

Dale Shepard, MD, PhD: What are the biggest gaps? What do we need to do to improve? It sounds like, quite honestly, a much more robust coverage on the pediatric side, but what are the gaps? What needs to happen?

Kate Eshleman, PsyD: That's a great question and I don't think we always know. I think we feel that we're doing a pretty good job. I think we are fortunate too because pediatric oncology in particular is a well-resourced group. I think there's a lot of organizations that really want to contribute to kids that have cancer and their families. And so, I think the thing that we're really working on is just being consistent, making sure that we are offering all these opportunities to every family. I think, again, if they're farther out in treatment and it's a little bit out of sight, out of mind, but we don't want to lose those families. And so, I think just probably that consistency is what we continue to work on and develop.

But I think we're fortunate that we don't have a lot of gaps. I think another goal for this year is to really work with our healthcare partners, our subcommittee of the Pediatric Hematology Oncology Healthcare Partners, which are a group of caregivers that have, in this instance, they're caregivers of children that have received care in pediatric hematology oncology. And so, I'd love to get their input on what they identify the gaps to be, because I think that's the voice that we need to know where we need to improve.

Dale Shepard, MD, PhD: One of the things that sometimes presents a barrier is coverage. Does that seem to be a problem? And it sounds like maybe not with the children, but oftentimes, if you start involving things like families and siblings and parents, is that an issue in terms of coverage for services?

Kate Eshleman, PsyD: It has not historically been an issue. I would say in Peds Hem Onc, of all the services that we offer, the psychosocial support services, I'm the only billable service. So, child life, art therapy, music therapy, that sort of thing, they don't bill, so coverage is never an issue. I think fortunately, in my realm, I can work with families, and if the child has an oncology diagnosis, that's a medical diagnosis, we have health and behavior codes, and part of those service codes are family therapy with or without patient, and so we do tend to have some flexibility for doing that. I think too, oftentimes, if a child has services covered through the Cleveland Clinic, generally the parents are on the same insurance coverage program, so if we refer to another provider in the clinic, that tends to be covered. So, we're often able to work through that and it hasn't been a frequent issue.

Dale Shepard, MD, PhD: That's excellent.

Kate Eshleman, PsyD: Yeah.

Dale Shepard, MD, PhD: I guess if people are listening in and they're saying, you know what? I think we could probably do better in this arena. What guidance would you give them?

Kate Eshleman, PsyD: I think, one, go to the literature and see the publication of these standards of care. They're very robust, they're very detailed, they give a matrix to measure how you're doing, and so I think that's a great place to start. And talk to colleagues. I think it is not necessarily peer supervision, but if you have a listserv, depending on whatever your specialty is, if you have a listserv, reach out to the listserv. Google psychologists who specialize in pediatric cancer, and don't feel afraid to reach out. I think all of us are in helping professions, and that doesn't just mean helping our patients and families. We're an academic medical center, we have lots of trainees that we work with, and so I think everyone's pretty willing to help and nobody wants to recreate the will. So, people offering to help and their share their resources, I think is common, so feel free to reach out.

Dale Shepard, MD, PhD: Excellent. Well, it looks like you guys have a really nice service to provide to patients, and it's very needed, and so it's great to see. So, appreciate you being here and giving us some insight.

Kate Eshleman, PsyD: Happy to be here. Thanks for having me.

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