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From mental health concerns to fertility preservation, adolescents and young adults with cancer require a specialized approach to treatment and survivorship care. In honor of Childhood Cancer Awareness Month, ACCC highlights a pivotal program from the University of North Carolina Lineberger Comprehensive Cancer Center and resources that meet the critical needs of these patients.
Adolescents and young adults (AYAs) have unique circumstances that set them apart from other age groups that experience cancer. Because these patients fall into the large gap between pediatric and adult oncology spaces, their treatment and survivorship care can be complex and requires a comprehensive, long-term strategy.
AYAs are included in the definition of childhood cancer from the ages of 15 to 19 but are more broadly defined as those who are initially diagnosed between the ages of 15 to 39. This subset of the cancer-affected population is increasingly being studied and advocated for due to its growing size and unique challenges. There are an estimated 2 million AYA survivors in the US and roughly 88,000 individuals who are expected to be diagnosed with cancer in 2026 that would fall into this category, according to the National Cancer Institute.
While program structure varies by institution, offering a wide range of services is critical for improving both treatment outcomes and quality of life for AYAs. At the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center, the need for a more holistic approach was identified in 2015 and resulted in the recruitment of multidisciplinary staff to address often-overlooked areas of care. A crucial cornerstone of this strategy is pediatric psychology, as many AYAs face complex mental health concerns, ranging from uncertainty about their physical and financial future in the decades ahead, to disruptions in milestone life events. Feeling left behind while their peers attend college, get married, and start families can lead to higher rates of anxiety and depression for AYAs than the general population.
Another foundational role in the program is UNC’s fertility preservation program director. AYAs can experience long-term reproductive concerns due to their cancer treatments, and many cite fertility as a matter of great importance. The availability of fertility support services early in the treatment plan, such as sperm or egg banking, and the opportunity to formulate a plan can provide peace of mind during a time when many patients feel like they have little control. Having these discussions early is critical, before patients make treatment decisions that alter the course of their adult lives.
Studies show that AYA participation rates in clinical trials are lower than in older and younger age groups. These trials are often avenues into cutting-edge treatments that are not yet routinely provided, making them vital for patients whose disease possesses complex histologic or genetic underpinnings, which often differ from the biological mechanisms that drive cancer rates in older populations.
At UNC, a research coordinator helps to inform patients of clinical trials and assess eligibility while an oncology liaison serves as a bridge of knowledge, compassion, and communication between patients and their primary treatment team. Additional support staff include a clinical social worker who can assist with practical guidance related to financial navigation or rehabilitative services and a project manager to ensure staff are working cohesively.
UNC makes it a priority to consider all aspects of an AYA patient and their individual care needs, creating an ecosystem that purposefully extends beyond its own staff and includes resources from relationships with working groups. Feedback from these groups has led to small, intentional acts that can be applied in many different settings: clustering clinic days together so that AYA patients can create relationships with one another and reduce isolation, adding an extra chair for a support person, and finding ways to improve comfort in infusion spaces.
Beyond the clinic, partnerships with advocacy organizations create a powerful outlet for connection and collaboration. For example, MIB Agents is a nonprofit that partners AYA patients with osteosarcoma and their caregivers with trained volunteers through its Ambassador Agents Program to help them navigate the complexities of cancer care. This integration with community spaces beyond clinic walls ensures that whole-person care extends beyond routine expectations; rather, it is intimately woven into the everyday rhythm of life for AYA patients.
ACCC is committed to highlighting resources for multidisciplinary cancer teams that work with AYAs:
For more information, visit the ACCC Adolescent and Young Adult (AYA) Services page.
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