Meet the team that’s changing cancer experiences for teenagers, young adults
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 and professor at the U-M 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: 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.
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 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.
For the entire conversation, check out the Michigan Health Lab blog!