Addressing Needs of Young Adults With Cancer

Adam DuVall, MD, MPH, is a rare medical oncologist who trained in both adult and pediatric hematology/oncology.

This distinction, which DuVall said he shares with only a handful of oncologists in the world, matches his role at University of Chicago (UChicago) Medicine, Chicago. Since joining UChicago in 2020, DuVall has helped expand its Adolescent and Young Adult (AYA) Oncology Program, which aims to provide comprehensive, one-stop care and support for patients with cancer aged from 15 to 39 years.

Started in 2012, the program is one of the oldest in a growing array of initiatives nationwide that seek to address the specific psychosocial and other support needs of patients with cancer who fall into the gap between young children and the older patients who more typically have cancer. Along with DuVall and other oncologists, UChicago’s AYA Program offers dedicated nurse practitioners, social workers, psychologists, a physical therapist, and a program administrator. A community health worker, who does home visits, helps patients coordinate travel, works with their insurance, and generally navigates the medical system, DuVall added.

The program receives about 1500-2000 visits a year, according to DuVall. What the young adult population with cancer has in common that distinguishes it from other age cohorts, he said, are its members’ particular psychosocial needs. “Going through adolescence and young adulthood without cancer, there’s plenty of things that are hard,” DuVall observed. “Put cancer on top of that, and it impacts every aspect of life.”

‘Millennials Have Higher Risk’

The proliferation of AYA programs comes as more and more studies have been published recently showing that young adults are increasingly getting cancer.

According to American Cancer Society research published in December in The Lancet Oncology, incidence rates of colorectal cancer (CRC) among young adults aged 25-49 years rose in the decade through 2017 in more than half of the 50 countries and territories examined. For the past 5 years studied, the incidence rate of early-onset CRC was highest in Australia, Puerto Rico, New Zealand, the United States, and South Korea. At the same time, the study found, rates among older adults in all of those places except South Korea were stable or declining.

Hyuna Sung, PhD, the study’s lead author, said, “Research has shown that Gen X and millennials have higher risk of multiple types of cancer compared to the older generations.”

Some of the cancers found to be increasing among younger adults are linked to “excess body obesity,” Sung said, including not only CRC but also cancers of the uterine corpus, gallbladder, kidney, pancreas, breast, and stomach cardia, as well as myeloma. Early onset of cancers not linked to obesity, such as testicular cancer and small intestinal cancer, has also been shown to be on the rise, Sung noted.

As cancer rates among young adults have risen, nonprofits have stepped in to help medical institutions open programs geared to their needs. Teen Cancer America, founded by members of rock band The Who, has partnered with 64 hospitals in 36 cities to develop AYA-focused programs, funding 85 hospital positions, according to a spokesperson. The Los Angeles–based nonprofit has also provided free consultation to 130 hospitals without formally providing a grant, the spokesperson said.

A map on Teen Cancer America’s website illustrates the nationwide spread of AYA programs, from UCLA Santa Monica Medical Center to Memorial Sloan Kettering Cancer Center in New York City, with more in between.

‘Setting Them Up for a Life of Meaning’

Michael Roth, MD, co-director of the AYA Program at the University of Texas MD Anderson Cancer Center in Houston, likes to say, “If you’ve seen one AYA Program, you’ve seen one AYA Program.”

In other words, offerings vary. “Most centers do not have comprehensive AYA programs,” Roth said, noting that at many sites the AYA Program might consist of oncofertility support. “That said, programs are doing the best they can, knowing that the AYA population is growing exponentially globally.”

Almost 90,000 AYA patients are diagnosed with cancer each year, and 85% will be at least 5-year survivors, Roth said. There are more than 2 million survivors of AYA cancer, he added, and if the median age of diagnosis is 30, they can live five decades beyond their cancer treatment. “Their life matters,” Roth said. “It matters during treatment. Their life after cancer matters.”

The AYA Program at MD Anderson began in 2017, and it sees more than 2000 AYAs diagnosed with cancer every year, according to Roth. The program is designed to complement the care that patients with cancer aged from 15 to 39 years or older may already be receiving from their primary treatment teams. New patients see a medical provider, a social worker, and a vocational counselor for discussions about their needs and concerns, and they have access to a nutritionist and genetic counselor.

The program offers psychosocial and supportive care for patients who may be facing challenges with school, work, relationships, having young children, and mental health, Roth said. Along with assessments and counseling around fertility risks and genetic predisposition, MD Anderson also provides patients in the program with a long-term survivorship plan.

“It’s not just increasing cures,” Roth observed. “We’re also setting them up for a life of meaning and happiness and productivity and health.”

Almost 40% of visits to the program are conducted virtually, according to Roth. “Our goal is to meet the patients where they are,” he said. “We want to be convenient, not be a burden.”

‘The Face of Cancer Has Changed’

Patients with AYA cancer diagnoses may be finishing up school or starting a job, developing their body image and sexual identity, or caring for young children or older parents.

“They feel incredibly isolated,” said Ann LaCasce, MD, MMSc, co-director of the Center for Adolescent and Young Adult Oncology at Dana-Farber Cancer Institute in Boston. “They go into the cancer center or their community practice, and everyone is double, triple their age.”

Last year, Dana-Farber opened a Young Adult Lounge meant for patients aged 18 years or older to be able to relax and, if they wish, interact between appointments. “When you talk to these patients, they want to meet each other,” LaCasce said. “They want to share experiences.”

The Young Adults With Cancer Program at Vanderbilt-Ingram Cancer Center in Nashville, Tennessee, opened its doors in 2019. It recently hired an interim nurse navigator, said Cathy Eng, MD, FACP, FASCO, director of the Program, which concentrates on patients aged 25-45 years.

“The face of cancer has changed,” Eng said.

She advises other oncologists to talk to their young adult patients as much as possible. “Really talk to them as an individual and see what other needs they have,” she said. “Even if they don’t tell you the first time, ask them the second time, ask them the third time.”

Christopher Cann, MD, executive director of the Young Adult Cancer Program at Fox Chase Cancer Center in Philadelphia, did his fellowship under Eng. He joined Fox Chase in 2023, and the Young Adult Cancer Program started accepting patients around the end of last year, zeroing in on patients aged 18-39 years.

Following the implementation of a new best practice advisory that pops up in the medical records system, he said, oncofertility referrals increased by 400% within 6 months.

“My hope is that if every institution throughout the country can have a young adult program, even something small like this can provide a large impact for patients,” Cann said.

The University of North Carolina (UNC) AYA Cancer Program, part of the Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, formed in 2015. It has expanded into a team of about 12 including a nurse practitioner, fertility counselor, and psychologist, said Jacob Stein, MD, MPH, the program’s AYA oncology liaison. UNC sees about 400 AYA patients with cancer annually, and the program interacts with slightly more than 100 of them, according to Stein.

“Our program has taken a very different approach, to target services, contact, and engagement with AYAs who we perceive to be at the highest need, either clinically or socially, for support,” he said.

Stein was the lead author on research presented last year at the ASCO Quality Care Symposium in San Francisco finding that patients engaged in the program were more likely to participate in clinical trials and received higher rates of fertility preservation and palliative care than AYA patients at UNC without program contact.

Andrew Smitherman, MD, MS, medical director of the UNC AYA Cancer Center Program, said the AYA field has grown impressively since a progress review group was started in 2005, which was backed by the National Cancer Institute and LIVESTRONG Young Adult Alliance. The group developed recommendations to address AYA oncology nationwide, in hopes of acting as a catalyst for future initiatives. Clearly, others caring for patients with cancer heard the message.

“If a colleague comes to me and says, ‘Where do I start, how do I make this change at my institution,’ I usually lead with changing the culture,” Smitherman said. “Educating hospital leadership about the importance of this population, educating colleagues, finding partners. And then start thinking about ways to make structural changes, like creating space. That’s worked really well for us.”

DuVall, Sung, Roth, LaCasce, Eng, Cann, Stein, and Smitherman declared no conflicts of interest.