In general, your risk for developing cancer rises as you age. As a result, cancers among children and young adults are rare; only about 5% of all cancers are diagnosed in those under 40.

But the uncommon nature of cancer at a younger age can make it difficult for the people who do have that experience to find an environment that feels appropriate and supportive for their treatment. This is particularly true for adolescents and young adults, who often feel out of place in settings geared either toward young children or older adults.

Enter the Adolescent and Young Adult (AYA) Oncology program, which was recently established at C.S. Mott Children's Hospital and the Rogel Cancer Center. Geared toward those ages 13 to 39, the initiative is made up of physicians, social workers and researchers with expertise in adult, adolescent or pediatric medicine. Below, AYA Oncology team members share more about this program and how it improves the experience for cancer patients in the middle of the age spectrum.

Why is it important to have a separate oncology program targeted toward the adolescent and young adult population?

Bradley J. Zebrack, Ph.D., M.S.W., M.P.H., research director of the AYA Oncology program at Michigan Medicine and professor at the University of Michigan School of Social Work: If you look at how cancer care is delivered in this country, if you're a child, you get cancer care in a children's hospital. If you're an adult, you get care in an adult care setting.

If you're a teenager or a young adult, you fall in this crevice where the children's hospital can be infantilizing. At the adult cancer center, young adults say it feels like they're hanging out with their grandma. Everything from support services to brochures are either created for little children and their parents or for older people. It doesn't breed a lot of confidence and contributes to some level of mistrust among young people. 

But, more recently, there's been focus and emergence, on the clinical care side, to provide age appropriate care for these young people and, on the research side, identify some of the issues unique to this older teenage and young adult population.

Emily Walling, M.D., co-medical director of the AYA Oncology program and assistant professor of pediatrics at Michigan Medicine: When we look at this population's survival compared to those younger than them and older than them, the gains that they've made annually are significantly less. The overall survival percentage is roughly equal, but they haven't made the same improvements annually, and that's been going on for decades.

The question of why that is is definitely multifactorial. One of the biggest reasons is lack of enrollment in clinical trials, and that's also for a host of reasons, but access is one of them. This is a very transient population; they're treated at community health centers at far greater rates than older or younger patients, who tend to be at cancer centers. 

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But even beyond that, there are just greater support needs with this patient population that then impact their adherence to their medical regimen – both ongoing treatment and follow-up for their cancers. Significant contributors to this are the unmet needs for mental health, educational and career support. 

Other issues come into play at this age range, too. A huge one is fertility preservation and sexual health education. Another is risk-taking behavior and certain developmental milestones toward independence that we don't have to address as much with younger kids.

What makes Michigan Medicine's Adolescent and Young Adult Oncology (AYA) program unique?

Walling: We started this program with a partnership between medical and pediatric oncology, the adolescent medicine division, the division of reproductive endocrinology and the School of Social Work. Rashmi Chugh, M.D. is the co-medical director of the program at the University of Michigan Rogel Cancer Center.

The partnership with adolescent medicine has been hugely helpful and is a unique aspect of our program. Where they have been critical is providing more mental health support. They spend at least an hour talking to patients about who they are, what's important to them and what their goals are, which makes the patients feel more cared for in a holistic sense. 

Plus, they have more access to social workers who do counseling; they're experts at addressing risk-taking behaviors and sexual health education. This partnership has helped ensure patients are getting equitable and consistent access to support services that already exist but weren't being referred to consistently before, like anti-smoking resources, for example.

We've also developed a really exciting partnership with the Adolescent Health Initiative, which is a component of Michigan Medicine, but works nationally with school clinics and primary care clinics to make sure they're adolescent friendly. 

We're in the middle of this 18-month pilot study with them, and they're vetting our whole program to make sure it's adolescent friendly. They're really good about saying things like, 'Hey, you should have some more adolescent-friendly signage in the waiting room because right now it's pretty pediatric centered.' 

What we hear from our patients is they feel out of place anywhere they go, whether it's the Rogel Cancer Center or the pediatric side. So the Adolescent Health Initiative has been helpful with identifying relatively simple fixes that can make a big difference.

The other big component has been developing a patient mentoring program. That's what all these teenagers and young adults want is to see someone who has been through this that they can talk to — who has seen the other side and has still gone on to go to college and get a job, who's been able to complete their life goals. In the moment, a cancer diagnosis feels very isolating and disruptive to accomplishing goals.

Our program initiatives are driven by our patient advisory board. We have a group of about 15 survivors of cancer who help ensure we are meeting the needs of this patient population in meaningful ways, and we meet with them monthly.

They've been hugely helpful with things that may seem kind of small but have a huge impact. For example, we've sent out graduation cards to graduating patients. We're working on developing a care package with comfort items for newly diagnosed patients who are in the hospital as well as developing YA-friendly teaching material instead of the rather dense, huge binder that I know they never read.

And then there's the whole research arm of this, which has been enormously active.

Yes! Why did you decide to include a research component in the AYA program?

Zebrack: Over the last five years, an organization called Teen Cancer America has been providing seed money to get AYA programs up and running for the first three years.

When Emily first proposed this idea of applying for one of these grants to develop an AYA clinical care program, I suggested we build in a research arm because that was something I wasn't seeing in some of the AYA clinical care programs that were popping up across the country.

The AYA Oncology program website lists seven different research projects going on. How do you choose which topics to study?

Anao Zhang, Ph.D., L.C.S.W., clinical research director of the AYA Oncology program: I can go ahead and talk about that. To be frank, I don't think we thought that our research would be this level of activity when we were applying for funding. We knew we had some research activities that we wanted to do, but I think we've surpassed our own expectations in terms of what we could achieve.

In terms of deciding what topics we want to research, it's sometimes clinically driven. We would hear from Emily or one of our other oncologists, who would say, 'We started to see this pattern, and we think it's an issue.' For example, we had a pediatric medical fellow come to us and say she would like to better screen pediatric cancer patients for depression.

So we'd then have a couple of brainstorm sessions and follow-up meetings to figure out how to make this possible, which may range from finding funding to writing a research proposal.

And it works the other way around. Nina Jackson Levin, our pre-doctoral fellow at the research center, might say to Emily, 'I really want to do a study around fertility preservation for cancer patients, and this is what we're interested in from the research side,' and then Emily and the clinical team will bring valuable perspectives in terms of what they think is important from the clinician standpoint. It's a process of negotiation.

Nina Jackson Levin, M.S.W., Curtis Center Pre-Doctoral Psycho-Oncology Fellow who's also funded by the National Cancer Institute's T32 grant: Absolutely. Sharing the on-the-ground context of clinical initiatives with us helps us tailor our research agenda to the current needs of the patients and providers, and clinicians like Emily are able to integrate findings from our research into their practice more efficiently than if a close partnership were not at play. 

Furthermore, barriers to medical research (namely, protections around patient health information) can keep research in the psycho-oncology space from moving forward. Having close partnerships with the physicians opens possibilities for a clearer look at research than would otherwise be possible. 

Zhang: Another distinct feature of the research aspect is that we are very much focusing on health disparity-related issues. That's thanks to Emily's perspective. She doesn't shy away from uncomfortable topics, and she's highly supportive of the ideas that come from research.

And Nina has an explicit focus on health disparity and inequality, so the very angle she brings to our research arm is asking whether we're providing equitable services and whether we're leaving certain populations out.

Jackson Levin: Yes, our driving motivation is to look at health disparities, and a dimension of that unique focus is health disparities within the domain of psychosocial concerns. We're looking at patient experience, issues of identity, issues of communication.

But there's also a real breadth of disciplines and methodologies within the research space. There's a well-roundedness that contributes to getting at the problem from a lot of different angles and accelerating the process of developing solutions.

It's also a very multi-generational program in the sense that we have everyone from full professors to master's of social work students to undergrads. So there's a range of levels of training and different professional goals, and I think that contributes to an equal diversity of approaches, skills and perspectives.

And finally, we're establishing affiliations with researchers at other institutions and that broadens the scope of possibility for our research. So there's a lot of activity and a lot of momentum behind it.

Wow, so much going on! What have you been working on in terms of research?

Zebrack: The good news is: 80% of young people diagnosed with cancer will be alive five years later. The bad news: 20% will die, and somewhere between one-third and two-thirds of those who live will still struggle with other long-term effects of their treatment. I just got a five-year grant from the National Cancer Institute to look at this psychosocial biological pathway that may be related to the long-term effects of cancer therapy for adolescents and young adults. If we can identify either biological mechanisms or psychological or social conditions that put these young people at risk for these late effects, we can develop methods to preempt those long-term late effects.

Walling: We also did a fertility study that has since sparked all these other ideas. That first one was to assess patients' understanding and acceptability of the way we do fertility preservation.

What was really cool about this is that our interviewers asked questions like, 'Well, why did you do this study?' They were just so smart. These extra questions didn't focus necessarily on fertility, but they very smoothly made it more about the cancer treatment experience. 

There were one or two young women, in particular, who were incredibly vocal about how different things we do were very distressing to them, without intention. One that stood out to me was a situation with a pregnancy test.

Jackson Levin: Yes, an AYA who identifies as lesbian was pushed by her providers to take a pregnancy test at an oncology appointment. She expressly told them that she is not sexually active with male partners, but protocol indicated that she needed to proceed with a pregnancy test. She was frustrated about this disregard and felt awkward and disappointed that she was forced to disclose her identities in this way without much personalized response. 

It's important for providers to be certain a patient isn't pregnant because the effects of proceeding with chemotherapy would be so detrimental if they were. But because there wasn't a protocol in place to address this situation, we knew we weren't meeting the needs of queer-identifying AYAs.

Walling: And then there was also a situation where they were doing a depression screen, but the nurse wasn't making eye contact with her. The patient was like, 'Why would I be honest if it seems like they're just going through the motions?' That's a real lesson to us. It's not enough to just do depression screening. You only get answers to questions you ask and ask in the right way. 

It was also very clear that we weren't doing any teaching at all about sexual health, which is very important for this patient population — not only because sex is an essential part of a healthy life but also because sex when you're having cancer treatment raises different risks that patients need to be aware of. It's not just pregnancy — it's increased risk of infection and of other things.

So that was very informative and something we could immediately translate to a clinical setting.

But what Nina and I are now focused on in a new study we're calling "Queering Oncofertility," funded by the Institute for Research on Women and Gender, is replicating the same thing we did before but specifically among sexual and gender minority patients. Fertility is obviously tied to biologic sex, but we're trying to explore how we do this in a way that is sensitive to diverse gender identities and sexual orientations.

And then Anao has been helping one of our oncology fellows develop her fellowship project. 

Zhang: Yes, so we've come up with an artificial intelligence-enabled speech data mobile app. It has a trained algorithm that recognizes the semantics and the acoustics of human beings. So the algorithm collects the speech data and through a three-minute conversation, in this case meaning you talk to the app on your phone, we will be able to have diagnostically valid depression and anxiety screening results.

The implication is huge. For super busy oncologists like Emily, she doesn't necessarily need to worry about or attend too much to the depression and anxiety needs of her patients. She can just ask them to use the tool (once the research is mature enough), and we'll be able to share a dashboard of all the depression and anxiety results for Emily's patients. So she can take a look at it once a month, twice a month, every two months. 

Walling: People in this age group are adapters of technology. They like this stuff. It's easier for them to talk to a buddy on their phone rather than sit on someone's couch and tell them how they're feeling. So I think this has the potential to be hugely helpful for screening and fill a very large gap.

We've only been up and running for about a year now, but I've noticed patients in general are way more willing to accept being part of the AYA program than they are to accept being seen by psychology or other mental health support services. There's mental health support within the AYA program structure, of course, but AYAs are more willing to hear us out if we're able to slip that part in like, 'These are the things we do. Does that sound cool? If so, we'll have someone reach out.'

Right at diagnosis is a tricky time because their heads are spinning, and there's a lot of information to get through. But when we just keep bringing it up and make sure they know their thoughts are valued, it's been really impactful.

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