Best Practices for Pediatric Cancer Patients with Autism Spectrum Disorder (ASD)

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 I and Sarcoma Programs. Today, I'm happy to be joined by Dr. Rabi Hanna, Chair of Pediatric Hematology, Oncology and Bone and Marrow Transplantation at Cleveland Clinic Children’s. Dr. Hanna's here today to talk to us about best practices for pediatric and young adult cancer patients who have autism spectrum disorder. So, welcome and thanks for joining us today.

Rabi Hanna, MD: I'm glad to be here.

Dale Shepard, MD, PhD: So, maybe just to start out, give us a little feel for what is it you do here at the Clinic.

Rabi Hanna, MD: Dale, I do supervise our department of pediatrics hematology and oncology where we have really a diverse group of physicians and providers who take care of many infant children and young adults with hematology and cancers. And my specific interest is actually kids with genetic diseases and also high-risk leukemia’s who may need a bone marrow transplant as a life-saving therapy for this disorder, that they may be resistant to regular chemotherapy, or this genetic and inherited disease can be usually cured to have bone marrow transplantation from another healthy person.

Dale Shepard, MD, PhD: Well, today, we're going to talk about a unique group of patients: pediatric young adult patients who have a cancer, but then they also have autism spectrum disorder. We're going to call that ASD throughout the rest of the podcast. Both are difficult. And so how do you approach that? So, how have you developed some practices to really treat two very, very difficult disorders?

Rabi Hanna, MD: I think this is really very important topic, because we are seeing increasing number of patients who have autism spectrum disease and also diagnosed with cancer. We know from the CDC that there is increased incidents of a patient with ASD. And the problem with this, it is really not one disease. This is a spectrum as you alluded to in your introduction.

And individual with autism spectrum disease have widely diverse abilities and needs, ranging from those who are non-verbal with severe anxiety associated behavioral challenges to those capable of understanding their illness, but who often experience emotional rigidity, inflexibility, and misunderstanding of the social situation.

And this presentation varies significant from person to person. So, the key in how we deal with them when they develop cancer or any life threatening disease is highly individualized assessment in my opinion and the intervention are needed. Like simple even question, how are you feeling, or why blood is going to be drawn, it can sometimes trigger anxiety and severe emotion that it could make the care of them very challenging.

So, understanding these triggers, understanding the patient and their families is key for us as a caregiver to be able to adapt our care and sometimes even our treatment to be able to deliver the care that this patient needs.

Dale Shepard, MD, PhD: So, how do you start? Do you normally start with the parent or the caregiver? Do you start with the physician who may be managing the ASD? How do you approach that? Because you're absolutely right. There's a tremendous range of things you may be dealing with and it's different in each case. So, how do you start the process?

Rabi Hanna, MD: I think it is really a team effort and it takes a village, but the key in our world, we call it individualized oncology support plan. So, not only the treatment, it's key here, the support. So, we gather usually our psychologist, Dr. Kate Sherman, in addition to our child life specialist and meet with the family and the caregiver.

And we try to get catalog of basically individual strength, abilities, competencies, and also get a list of what's the individual anxieties, behavioral. And we try to map them to possible trigger events in either their life, or what we could imagine as a therapy around, and trying to build on this. And we also have a great resource at our autism school at the Shaker Rehab.

So, we very frequently reach out to her and sometimes we will have a patient meet our caregiver, meet with them, and occasionally they will come to us here in the Infusion Center to observe the family and the patient interaction. And give us clues to how could we really change our approach. Simple things as really having the first thing to come and have them in a quiet room.

And instead of trying to do the blood draw in the Infusion Center or in the lab sometimes can really help them to start their day on a better. We sometimes change really... We always thought that getting them early so they can eat if they have a sedation so they don't remain NPO for long period seems counter intuitive to the family who always observe their child, for example, like to sleep, doesn't wake up until nine, and we have to modify a little bit our approach to get them later in the day. So, the key and the starting, it is working with the family who are going to be your best resource and then our support team to come with the individualized oncology support plan.

Dale Shepard, MD, PhD: And then is that a plan that as you move through treatment, there are periodic reassessments to fine tune that plan, or is that done in a standardized way or as an as needed way?

Rabi Hanna, MD: So, we, in oncology, always think about the standardization and I think that's really become so hard when we deal with this patient. And you are absolutely true that this plan will change. For example, in a patient with the leukemia, their first phase of therapy can be in-patient, then they go out-patient, then they may need admission. And this circumstances can change.

And even the patient adaptation and behavior could change as they get exposed more. So, we absolutely re-evaluate that. And we learn and we have had patient who will become mute. They will not talk in the hospital. Period. They wouldn't even response to, "How's your pain?" So, we have to come up with a different approach, because this child has not been exposed to the circumstance in the past.

So, we will really have to, at that time, come up with a newer... And the trial. And sometimes we try many things until we find out. And for example, I always love to say, one of our patients loved traffic light. So, we brought traffic light to the patient room and we use the green and the red as a way to tell us if he is in pain or not, because otherwise that patient would not absolutely communicate or express any emotion to us.

Dale Shepard, MD, PhD: Yeah, communication is so important. So, as we treat patients, how are they tolerating the treatment and what kind of symptoms they have from their disease? And so that seems like it's a particularly difficult challenge.

Rabi Hanna, MD: Definitely. That's our biggest struggle, especially with in-patient service. I think the out-patient where there is a primary team, they tend to know the patient well and the patients start to feel confidence. And they can communicate. And I always try to remind people that 44% of patients with autism spectrum disease have an average IQ or even higher.

So, it is the expression that they may lack. It is the coping that it is hard for them. So, it is our duty to try to find out what their strength. And some patients will communicate through drawing, some patients really liking music. And that's where the individualization of that, even communication becomes important. And we luckily have really great support team from a music and art therapy that enable us to serve this patient every day of the week when they are in-patient to help us communicate with them.

Dale Shepard, MD, PhD: How about individualizing the treatment itself? Are there cases where you may try to push to an oral therapy, or... You mentioned challenges of in-patient therapy. And so do you sometimes try to make adjustments in the types of treatment?

Rabi Hanna, MD: Excellent question. We have done that occasionally in patients where we think it's not going to compromise on the ultimate goal, which is a cure with a minimum side effect. So, a patient with a Hodgkin's disease comes to my mind where we have really many different type of chemotherapies that they can achieve a reasonable and similar overall survival, but they may have a different side effect profile.

So, we try to choose medication that they may... Our treatment plan that they focus more on out-patient and have less chance of fever, neutropenia, and requirement for in-patient. The second thing, it is actually the steroid itself and the treatment can sometimes trigger some emotional bursts or other problem behaviorally. So, we're trying to avoid treatment plan that they may have steroid in it and come up with other medication that focuses on oral chemotherapy.

But there are diseases unfortunately they may have a poor prognosis and there is really one therapy that is offered clear benefit. That becomes harder. And we will have an honest discussion and with the parents and family to define the goals of their care. If it is cure, we will try to support them through that, but it's equally important to pay attention to the quality of life for this patient.

Dale Shepard, MD, PhD: What about follow-up and more long-term care survivorship? Do you continue to tweak those plans really pretty much throughout the course of their therapy and follow-up?

Rabi Hanna, MD: Absolutely. I think we continue to evaluate and re-evaluate. So, we try to do most of the survivorship follow-up virtually for them. Many of them do not like to come to the hospital, even if it is an out-patient. So, we have used a lot of virtual visit with many of these patients and minimize the intervention unless it's absolutely necessary.

We also, in our survivorship, we really incorporated a lot of genetics counseling. And especially with the help of genetics and Cleveland Clinic, who are really one of the pioneer in cancer genetics, and Dr. David Harris has found a lot of overlap in the genes that predispose to autism spectrum disease and patient who have cancer, like P10 genes or some other genes and the rest pathway.

And we're trying to do more genetic consult to help them have more definitive diagnosis. And we're even doing some clinical trial for this patient in terms of trying to target their autism spectrum disease that they may have not been linked to specific gene.

Dale Shepard, MD, PhD: So, certainly we talked about how parents, caregivers can be helpful in terms of understanding behaviors and ways to communicate and things upfront. Through the program that you have set up and the teams you have set up, are there support for those families and caregivers? Because clearly there's challenges in terms of being a caregiver in that situation. Do you have support for them as well?

Rabi Hanna, MD: I think we can definitely use more support. We have a sibling program that tries to help their siblings. That they may be also struggling with that. We extend the psychology support and to the caregiver, the parents, and we help to have sessions with them. But I think those are really the heroes. I can't imagine. And I know how much they really struggle not to have only one disease, but two diseases and through that journey. And I wish we have more to offer them to help them through that journey.

Dale Shepard, MD, PhD: What are some of the biggest gaps that you see? Where do we need to make the biggest progress in terms of taking care of the patients that have these two disorders?

Rabi Hanna, MD: I think really many of this young adult patient still needs more help and services. I think many of the services provided here are tailored to children. And absolutely we're trying to fill the gap for the young adult, but so many of older adults can be sometimes a challenge. And having more resources in the psychosocial team, having more psychologists, more art therapists, I think would be beneficial.

The second gap that I think it's important, it is even also the tailoring the therapy. We are learning more and more through precision medicine and we're finding genes that they could be linked and whether this genes can be targeted so we could change the therapy from what we've offered to other patients to patients who could have a predisposition and could be target. I think that's where clinical trial is needed. So, we would need more clinical trial specific for this patient and see if we can make their therapy better tolerated for them.

Dale Shepard, MD, PhD: And I guess when we think about the therapy changes, is there a suggestion that with the genetic changes that take place and as underlying cause of both disorders that there are differences in efficacy of some of the therapies? Maybe tolerance is one thing, but do we notice there's a difference in how well they work?

Rabi Hanna, MD: It's very good question. We have not seen differences in efficacy. I think it is the tolerability and the side effect. There has been few non-conclusive publication about the link about autism spectrum disease and the genes that they are discovered there and cancer, because many of them are seen in cancer. But there is a publication from Iowa University that showed that these patients are not at increased risk of cancer.

So, I don't know. And literature is still really non-conclusive in terms of one, the incidence and two, in terms of the efficacy. Despite the increasing numbers, I don't think we have enough to say about the efficacy, especially if we are changing the plan occasionally. It makes it harder to assess the efficacy for this patient population.

Dale Shepard, MD, PhD: So, this is a very resource heavy endeavor. What happens in the community? Or do most patients who have both ASD and cancer... Are most of them referred to you in your group? Or how is that generally handled?

Rabi Hanna, MD: I think it depends on the disease's spectrum and how functional is that child or young adult. So, we tend to see many of the non-verbal or the low functioning patient referred to us. And my assumption based on the incidence of autism spectrum disease, that there are many of these patients and probably served in the community. And they are not coming to a comprehensive cancer center like us.

Dale Shepard, MD, PhD: Are there registries or anything? You mentioned trials before. Are there any institutions that have gotten together to do registries to help out with this, or is it too diverse to really consider doing that?

Rabi Hanna, MD: I know of one organization that is trying to gather patient natural history and gather more data about their long-term follow-up, but I am not aware of registries specifically for cancer in this patient.

Dale Shepard, MD, PhD: And so if people are listening in, we have some physicians that might want to develop a program. What kind of guidance would you give them?

Rabi Hanna, MD: I think you do need to meet with your psychosocial team. Know the resources that you could provide for this patient. Starting with a social worker and the psychologist. And then have to individualize and try to get help further if it is an art therapy or music therapy. But the two essential, it is the social work and psychologist to help you get to know the patient and the skills.

We have tried to... Even as a provider, we actually took lessons in some of communication methods that called cognitive picture rehearsal, positive coping scene where it help us to really teach the child or their caregiver with the expectation of... And rehearse what is going to be the plan, the end of the treatment, and the requirement. So, those are I think the core element and then there is going to be additional resources based on that patient needs.

Dale Shepard, MD, PhD: Because you had mentioned things like art therapy and music therapy, and those are not easy things to necessarily establish. It sounds like you have a very cohesive team.

Rabi Hanna, MD: We definitely believe that it is important to treat the patient, not the disease. And many of these diseases have emotional ramification. And we have to try to pay attention to this emotional and psychosocial events in addition to the medical problem.

Dale Shepard, MD, PhD: Well, that's some great insight you've provided. So, any additional comments?

Rabi Hanna, MD: No. Thank you so much for having me. And I'm glad that this podcast can really shed a light on this combined journey of patients with ASD who have cancer.

Dale Shepard, MD, PhD: Well, thank you very much for being with us today.

Rabi Hanna, MD: Thank you so much for having me.

Dale Shepard, MD, PhD: This concludes this episode of Cancer Advances. You will find additional podcast episodes on our website, clevelandclinic.org/canceradvancespodcast. Subscribe to the podcast on iTunes, Google Play, Spotify, SoundCloud, or wherever you listen to podcasts. And don't forget, you can access real-time updates from Cleveland Clinic's cancer center experts on our Consult QD website at consultqd.clevelandclinic.org/cancer. Thank you for listening. Please join us again soon.