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Supporting AYAs with cancer truly takes a village. Multidisciplinary collaboration, community partnerships, survivorship champions, and patient voices are all essential to building programs that meet the needs of this diverse population.
Adolescents and young adults (AYAs) with cancer occupy a unique—and often overlooked—space in oncology. Defined broadly as patients aged 15 to 39 years at the time of initial diagnosis, this population straddles pediatric and adult care models and often faces challenges distinct from both. With questions about fertility and independence, coupled with financial stressors and feelings of isolation, AYAs need tailored approaches that extend beyond treatment.
In the final session of the state societies' AYA Oncology Screening and Survivorship Services webinar series hosted on July 9, four oncology leaders shared how multidisciplinary teams and community-based collaborations are reshaping AYA cancer care.
Jennifer M. Orozco, MD, pediatric hematologist/oncologist at Gundersen Health System in Wisconsin, opened the session by painting a vivid picture of a newly diagnosed 19-year-old: a college student suddenly facing life-changing uncertainty about school, relationships, fertility, and survival.
“Sometimes they’re treated on the pediatric oncology side where they’re among 5-, 6-, and 7-year-olds or younger, and sometimes they’re in the adult oncology setting, surrounded primarily by older patients,” Dr. Orozco explained. “We know from AYAs that they often experience sense of isolation and feeling like they don’t belong.”
To counter this, Dr. Orozco’s community-based program integrates behavioral health within days of diagnosis, connects patients with peer mentors, and normalizes conversations about fertility preservation and financial stress. “We’re small, so we’re able to personalize our care,” she said. “And with AYAs in particular, we try to normalize the option to seek behavioral health services.”
Next in the webinar was Emily Haines, PhD, research director of the AYA Cancer Program at The University of North Carolina (UNC) and assistant professor in the Department of Implementation Science at Wake Forest University School of Medicine, who emphasized that AYA care must be both holistic and equitable.
“Our program was born in 2015 out of the vision of a really remarkable teenager named Sophie who received care at UNC. At the end of her life, Sophie expressed a wish to help other young cancer patients maintain their dignity, identity, and independence, said Dr. Haines. “Her parents put this wish into action by starting the Be Loud Sophie Foundation, which supports our program to this day.”
UNC’s program now includes social workers, nurse practitioners, fertility specialists, oncologists, and others working across pediatric and adult oncology. Tools like the AYA Needs Assessment and Service Bridge help identify and act on patient concerns. Still, Dr. Haines cautioned against trying to do everything at once: “You cannot do it all. We tell people who are seeking advice on how to get started to pick the thing you are passionate about that aligns with existing resources or with organizational priorities.”
Looking forward, UNC is expanding its reach through a hub-and-spoke model. “Our goal is to collaborate with our affiliate cancer programs to improve AYA care across the network,” Dr. Haines stressed. “This model should maximize an AYA’s ability to receive care closer to home.”
At the University of Wisconsin Carbone Cancer Center, Cathy Lee-Miller, MD, director of the AYA oncology clinic, cofounded the fully virtual AYA Oncology Program. This model allows patients to access comprehensive 1-hour visits anywhere in Wisconsin or Illinois, followed by a case review from an interdisciplinary team.
“One of the biggest challenges we had when opening our clinic is that there simply isn’t enough physical space,” Dr. Lee-Miller said. “We [sought] to leverage telemedicine for this patient population.” Early data demonstrate the model’s effectiveness. “The [supportive care] resources identified by our interdisciplinary team show the power of a multidisciplinary approach for these patients,” she added.
Dr. Lee-Miller also described the program’s efforts to engage primary care providers (PCPs) in survivorship care. “We came up with some educational opportunities for PCPs who are interested in how to provide guideline-concordant survivorship care for AYA oncology survivors,” she said.
Closing the panel, Sandra Kurtin, PhD, ANP-C, FAPO, director of advanced practice and clinical integration at the University of Arizona Cancer Center, urged clinicians to weave survivorship into every patient encounter. “Survivorship is a process, not a single visit,” Dr. Kurtin explained. “We try to treat each visit as a survivorship visit, tailored to the individual patient and where they are in the survivorship journey.”
Kurtin described her team’s work to create survivorship note templates that are concise and easy to read, with end-of-treatment summaries, embedded resources, and follow-up recommendations specific to the patient. “We’ve moved away from very extensive survivorship care plans because our feedback from the primary care doctors is that they are too long. They need [them] to be succinct and focused so that they can successfully take on that care,” Dr. Kurtin explained.
Throughout the discussion, one message rang clear: Supporting AYAs truly takes a village. Multidisciplinary collaboration, community partnerships, survivorship champions, and patient voices are all essential to building programs that meet the needs of this diverse population.
As Dr. Haines summarized: “Aligning the passions and the priorities of your broader system, as well as the various people and groups operating within it, can go a long way toward creating a culture that hopefully acknowledges AYA oncology as its own distinct subspecialty. But more importantly, it deserves a community of support—because no single program can do it all.”
Find more information on this AYA webinar series, including speaker profiles and links to the webinar recordings, with additional resources on The Arizona Clinical Oncology Society, Indiana Oncology Society, and Wisconsin Association of Hematology and Oncology resources webpages.