Adolescent and Young Adult (AYA) Cancer Program

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. Stefanie Thomas, director of the Cleveland Clinic Children's Adolescent and Young Adult Cancer Program. She's here today to talk to us about that program. Welcome, Stefanie.

Stefanie Thomas, MD: Hi.

Dale Shepard, MD, PhD: Maybe just start out, give us a little bit of background on what's your role here at Cleveland Clinic?

Stefanie Thomas, MD: I'm a pediatric oncologist. I take care of children clinically of all ages. I'm part of both the leukemia and lymphoma program at the children's hospital and the solid tumor program. I know Dr. Shepherd well through our shared sarcoma patients. In addition to that, I do our quality improvement and run our adolescent and young adult program. I get to do a bunch of different stuff and have some different hats, which is a lot of fun.

Dale Shepard, MD, PhD: Excellent. Well, today, we're going to talk about the Adolescent and Young Adult Cancer Program. Maybe to start, what is it, and what do we accomplish in here?

Stefanie Thomas, MD: AYA has become... or Adolescent and Young adult, which I will call AYA for the remainder of this podcast, has become really a national movement since the 2000s. It started because there appeared to be a lack of survival improvement in this age range, 15 to 39-year-olds compared to children, and especially those 15 to 21 or 26-year-olds that are traditionally treated or can be treated at a children's hospital. People were wondering why is it this age range not getting the same improvements that we're seeing in younger children. The reason AYA developed on a national stage is really because of that. Then, that led to a whole other host of research that was done in this area.

Some of the biggest things that we found... I think we all inherently know this population, especially the late teens, early adults, up into their twenties are really finding themselves... They're more concerned about fertility, and making partnerships, and having families. They're going through education. They're not as financially secure. We realized that this population needs to be supportive in a different way. What was so hard is that this age range gets cancers that are more pediatric-typic versus also adult. I, in the children's hospital, have seen 13 or 14-year-olds with colon cancer. And I'm like, "Oh, shoot, I don't know what to do with this." I'm calling over to my adult colleagues, and they're helping me out.

Then, we have 30 or 40-year-olds that are diagnosed with Wilms' tumor or nephroblastoma. Our adult colleagues are like, "Oh, shoot, we don't know what to do with this," and so they're calling us. It's this strange age range where the patients don't necessarily fit age-wise into where the diagnosis is typically treated. How do we support them developmentally and give them the resources that they need so that they can be treated by experts in their field and get their expert treatment where the expert treatment is, but then support them socially, to make sure they get all the other services that they need?

Dale Shepard, MD, PhD: Big picture: tend to be more of a biologic difference, do we think, or is it more delivery of care? A little bit of both?

Stefanie Thomas, MD: I think it's a little bit of both. There are definitely biologic differences. I think the acute lymphoblastic leukemia population, we see that really classically, where there are different genomic differences as people age. Those genomic differences in their cancer makes their cancer more difficult to treat. I think in certain subtypes of cancers, there is genomic differences. I do think a lot of it, though, is health delivery and health services. I think when you talk to teens and young adults, especially with solid tumors, they'll tell you stories of how they went back and forth, and back and forth to their doctor or, more traditionally, different providers, urgent cares because they don't typically have a medical home at that age. They don't have someone that will follow them up routinely. That lack of medical home and the fact that you just don't think of a healthy 20-year-old guy coming into your clinic, having cancer is like even a possibility makes your diagnoses delayed based on our research and then where those patients are treated.

It's a rare cancer population. It's about 70,000 new AYA diagnoses per year: about 5% of the total cancer population in this country. Because of that, those patients should probably be treated at bigger centers because those cancers are usually rare, or at least should it have maybe like an opinion from a bigger center, because I firmly believe you treat patients where their needs are met the most. We know that patients that are treated in the community, because these cancers are so rare, they sometimes don't get the same type of support that they would get at a bigger center. I'm not talking pediatric versus adult. That's a whole other big argument, which I think can get silly and out of hand. But just making sure that those patients are seen by experts in their field is really important. It doesn't always happen.

Dale Shepard, MD, PhD: A lot of its experts in their field for their disease type. For instance, you mentioned colon cancer.

Stefanie Thomas, MD: Exactly.

Dale Shepard, MD, PhD: You'll reach out to the adults. Certainly, if I have a rhabdomyosarcoma, I reach out to you guys. I think that's key. But there's another episode of our podcast series that I talked to Dr. Trucco about clinical trials, early phase trials, and how children are getting involved more. With this particular population, the AYA population, what makes most sense? They bridge pediatrics and adults. Does it make sense, particularly given some possible biologic differences, to have specific AYA clinical trials?

Stefanie Thomas, MD: I think there are. Again, I think leukemia did a really nice job with this, where there were specific AYA trials. Basically, the adult cooperative group was able to take what the pediatric trial is and make it so that adults can go on those trials too. The pediatric critical is more intense, and so it needed some changes, but it really seemed to help this AYA population. It was made directly for that group. I think what else is just super important, and it has been happening more recently, is NCTN, the National Clinical Trials Network. There is this huge push to actually work together, which I know sounds like this should have been happening all the time. But for example, there have been cooperative group studies that have been co-sponsored by COG or Children's Oncology Group. Then, one of the adult cooperative groups.

It's been really awesome to see how in a non-rhabdo soft tissue sarcoma, for example, there was a very nice study. Germ cell tumors have had cooperative group studies now that are going across the pediatric in the adult age range. The germ cell study goes from birth until 50/60 years old, so anyone can enroll on those studies. Because they're co-sponsored, you keep the enrollment at your own institution, which is also really nice. You don't have to send the patient somewhere else for them to get enrolled onto a study. Because I think that has been a big hold up for a long time, even though COG studies in sarcoma, for example, have really allowed enrollment up to age 30 for a long time now. The patients haven't been able to enroll in those studies because patients aren't treated at COG sites.

Now, you can be treated at an alliance site and be able to enroll on a co-sponsored studying. That takes patients all the way from birth until when they naturally don't have that disease anymore, which has been really nice. That is new. That is very new, and that is not reflective in the data that shows that there has been a lower enrollment for AYA patients. I think with that, and with now that the phase one, like Dr. Trucco focused on allowing younger enrollments, down to age 13 or 11, for adult drugs, which is also very new and also, allowing in diseases or in drugs that they haven't had adult studies yet, allowing older adults to be enrolled on one of these pediatric studies, I think will really help bridge the gap for this age range because I want patients to be treated at their hospital to be close to their family, to be treated by an expert in their field. Bringing trials to patients, for me, has always been a really big goal.

Dale Shepard, MD, PhD: You mentioned that cooperative groups and their ability to be nimble enough to take on AYA issues. How about industry? How about support for investigator-initiated trials? Is there been a similar increase in support for those, or is that lagged?

Stefanie Thomas, MD: It's like a little bit in some ways industry, especially in decreasing that age range, or I should say the FDA allowing industry to decrease that age range that has been helpful. I think what's always been difficult about pediatric studies and then in AYA studies because they're both such a small percentage of the cancer pie, bad as that sounds, is that drugs are sometimes developed or starting to be developed. Because they don't look like they're going to make a lot of money, they get dropped because they really only help a small group of patients. Now, recently, with the NTRK drugs and things that, again, are usually a much smaller population, but it had just really amazing responses. We've been able to see industry really step up and develop drugs, really, for these more orphan diseases, which has been a really cool thing to see. I feel like the cooperative groups are trying to push ahead, but industry definitely is there too and in support.

Dale Shepard, MD, PhD: All right. We've been talking a lot about the research side because that's what leads to better therapies and knowing what we're supposed to be doing. Maybe a last question on that topic is, I know you've looked in the past about enrollment in clinical trials in this group and how that varies... I, as an adult trialist, always get this jealous sense that, on pediatric side, it's easy because mom and dad said, "Yes, you're going to do a trial." Then, I have to do a little more convincing. The numbers seem a little lower than pediatrics and AYA. Tell me a little bit about that and how we fix that.

Stefanie Thomas, MD: Yeah. I think what's interesting about that is, as you get older into the AYA age range, especially in your thirties, those numbers look really similar to adults. I don't know what numbers exactly you're talking about. But if you compare it to SEER data and clinical trial enrollment, which isn't the cleanest or probably the best way to actually do that, but it's about 2 to 3% of patients enroll on study. That's similar in the older AYA population than to the adult population.

For kids, it is significantly higher. It's almost like 50%. I do think part of that is possibly because of parents. I think also children's oncology group, in general, has made it really a priority that there basically is a study that's available for almost every single patient. Availability of clinical trials is something that is definitely higher on the pediatric side than on the adult side. I think that's the same with the AYA population.

I think there are studies available nationwide for these patients, but that doesn't mean that they're available at that treating center, which brings into investigator-initiated or pharmaco studies, where they're not open at every single center. Unlike a children's oncology group study, where if you walked into our door, or if you walked into a children's hospital in Chicago or a children's hospital in California, we'd all have the same studies that are available to the patient. It's a little bit of a different of a culture. I think it's possible just because the population is so much smaller.

In terms of making it better, I think basically connection and communication are your biggest things. I do think industry is working on trying to allow for patients to have easier access to trials at their treating institutions. I think there is a push nationwide to be able to decrease some of the costs associated with opening a trial because I think that's the overhead of opening a trial when you only are going to have one or two patients enroll. It's not something that is feasible for adult medicine.

I think, in pediatrics, it's... Again, we eat a lot of that cost just because we know that's what we do because the populations are just so small. Really, well, it's going to take reform on the trial side. It's going to take reform really on how much reimbursement you get to actually put someone onto a study. It's going to require those cooperative groups or those industry trials to be willing to open up their studies at smaller sites for less cost.

Dale Shepard, MD, PhD: Let's switch to the clinical side, everyone that walks in, some people participate in trials, but everybody needs care. How have you built this program in terms of optimizing available support? I mean, certainly, it takes a lot of players. How does that look in this program?

Stefanie Thomas, MD: COVID definitely hit us because all our plans got pushed back. We've now recently started doing things more virtually. But what the goal of this program is, is to be meeting every patient that is 15 to 29 that comes into our doors. AYA technically goes up to 39. I think we'll eventually get there, but right now, we're working on that more developmental young adulthood, leaving parents' house type age range.

We have developed an AYA resource guide, which we're super excited about. We can totally share with anyone who is taking care of patients in that age range. We have two virtual support groups that are going on right now. One that is 13 to 17 and then one that is 18 to 29. The 18 to 29 one will be running on every third Wednesday, at 5:30 PM. We can give information to any of the physicians that might have patients in that age range. These are either for support for patients that are both on treatment right now or also in survivorship if they're for more support.

We are starting some focus groups on what is the best way to build the program and what patients want clinically for support. The goal really is to meet the patient where they are, so both in terms of physically where they are. If the patient's over at Taussig and they think they could use some help or some extra supportive care services, we'll go there. We'll come meet with them. We can talk with them. If you don't want us meeting with them directly, we can give any type of resources to the social workers that are already working with the patient. Whatever we can do to support the family and support the physicians and the treatment team, and we will continue to really support them along their way. If at the beginning they're not really interested, and then they want to, then we'll eventually meet with them.

The overall goal is to be doing a lot of this stuff in person. We are hoping to really just build community. That's really what our big goal is in terms of the support, to be able to allow patients to feel like they're not alone. I think especially during COVID. AYA patients used to say that they would be sitting alone in the waiting room, and they'd look around. They'd be like, "Oh, all people that are either their parents or their grandparents' age in the waiting room with them. We want them to not necessarily have that feeling. But we also want, now, during COVID, where there is no waiting room anymore... I think it can be even more isolating, and so to try to build that community.

Dale Shepard, MD, PhD: Now, you mentioned building community. I think that's something that's pretty cool. Maybe just elaborate on that. You've mentioned virtual support groups. Certainly, COVID has put a barrier, but tell me a little bit more about that building community. I know that we've had discussions before, and you've talked about things like outings and activities where people can actually get together with people. It's something we don't really think about much on the adult side. That's a totally different way to think. Give me a little more info on that.

Stefanie Thomas, MD: Yeah. The goal of this is to be able to go out. Especially if you have a partner, if you have kids, to be able to do events where families can meet each other, or if you're single, to do events where you can meet other people. Meaning, go to a baseball game together, doing it at the zoo together. What we'd like to do is build on the skills with it. We are working on trying to get a virtual art therapy night going where it's about drawing, but going through self-expression and actually using art therapy to work through some of those emotions that you might be going through as part of the cancer experience and utilizing our awesome art therapist. Same with music therapy. The goal is to eventually be able to do that in person.

We did partner with a philanthropic organization called Elephants and Tea. It's a AYA cancer magazine, which is really awesome. We started just last week a virtual happy hour, which we're meeting once a month. The next one we're doing, we're going to be playing games at, this we mostly talked about Netflix shows. It's open to anyone in Cleveland. We actually partnered with the AYA program over at university hospitals and are trying to do this together with them. Again, since this is such a rare patient population, we're hoping that this can both allow for more community to be built, but also possibly, letting patients know that it might be treated in a different hospital in the area, what resources that we have at Cleveland clinic, and then what ways that we might be able to help them here. Anything really to strengthen the cancer community in Cleveland.

Dale Shepard, MD, PhD: Awesome. Some outstanding initiatives. You mentioned, COVID sort of put a little bit of a barrier in a few things, but this is certainly a tech-savvy group. Have there been actually some advantages in terms of outreach with remote capabilities?

Stefanie Thomas, MD: For example, for one of our first happy hours, one of my patients was able to log on from her hospital room while she was getting chemo, which definitely would not have been able to happen if this was an in-person event. The ability to be able to do things wherever you are, they're also more convenient times. We were able to start at 5:30 or 6:00 at night because a lot of people are working from home. That wouldn't be possible without really the COVID situation. Things would be later. In the winter, in Cleveland, going out of your house after eight o'clock at night is not usually something that people like to do. The virtual platform has been really nice. Clinically, I'm sure you've noticed the virtual platform has been really nice for a lot of our young adult patients, where they can maybe get counts checked locally, or they might have a rash or a question or something that you can see on the screen. You're able to answer those in a virtual platform.

Dale Shepard, MD, PhD: Or Maybe tap into your resources and knowledge when there may be seeing other providers and maybe want to see what your program has to offer.

Stefanie Thomas, MD: Exactly.

Dale Shepard, MD, PhD: How can physicians that might be listening... How can they get in touch with your program, and how can they have patients benefit from all the great things you're doing?

Stefanie Thomas, MD: I'm working on getting an email address. But until then, they can get ahold of me via email, which is a ThomasS29@ccf.org. But probably the better person to get ahold of is Allison Himes. She's our program director, and her email is ahimesa@ccf.org. She can get anyone in touch with me or with Taylor Buss, who's our social worker who has all of our resources available. We can send those out to anyone who needs them.

Dale Shepard, MD, PhD: All right. Excellent. Well, thank you for all of your great insight today, Stefanie. Do you have any additional comments?

Stefanie Thomas, MD: I think that's it. I guess we're looking to do focus groups right now. We're focusing on the pediatric AYA population just because those are the patients we know. But if you have patients that you feel like could give us some insight of how to better support AYAs where they're treated, we'd love to hear from them. We'd love to get their names so we can contact them and find out if they'd be interested in talking to us and helping us build this program.

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

Stefanie Thomas, MD: Thank you so much. It was really great being here.

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. Don't forget you can access real-time updates from Cleveland Clinics Cancer Center experts on our Consult QD website at consultqd.clevelandclinic.org/cancer. Thank you for listening. Please join us again soon.