Adolescents and young adults (AYAs) diagnosed with cancer, defined as individuals between 15 and 39 years old, often require specialized support to navigate the complexities of treatment and care. A recent study at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center demonstrates the significant impact of targeted AYA programs in improving access to essential services. These programs address the unique challenges faced by this age group, including fertility concerns, financial difficulties, and the need for peer support.
Impact of AYA-Specific Programs
The UNC Lineberger Comprehensive Cancer Center's AYA program, established a decade ago, has substantially increased its assistance to AYAs with cancer. According to findings presented at the American Society of Clinical Oncology’s Quality Care Symposium, the program has led to large increases in the number of AYAs undergoing fertility counseling, a critical consideration for this age group. Furthermore, the program has significantly boosted AYA enrollment in clinical trials and facilitated access to other nationally recommended care guidelines.
Dr. Jacob Stein, M.D., M.P.H., who presented the findings, noted the growing interest from other centers in replicating the UNC program. “A lot of [centers] are now reaching out and asking: ‘How do we do this?’” he said. Dr. Stein also highlighted the concerning trend of rising cancer rates in younger adults, emphasizing the timeliness and importance of expanding AYA-focused care.
Origins and Evolution of the UNC Program
The UNC AYA Cancer Program was inspired by Sophie Steiner, a young patient who recognized the need for age-appropriate care within the healthcare system. Her parents founded the Be Loud! Sophie Foundation, which provided initial support for the program's establishment. Starting with a single social worker in 2014, the program has grown to include 11 team members, including nurse practitioners, a fertility counselor, and a psychologist.
The program focuses on tailoring assistance to individual needs, recognizing the diverse challenges faced by AYAs. “A 16-year-old with Hodgkin lymphoma who’s living at home with their parents is so different from a 37-year-old with two kids and early-stage breast cancer, or a 25-year-old with advanced osteosarcoma,” Dr. Stein explained. The program prioritizes connecting with individuals at the highest risk of encountering difficulties during cancer treatment.
Between 2015 and 2022, the program increased its reach from connecting with 6% to over 25% of AYAs seen at UNC. Participants were more likely to be young, unmarried, Black, and have advanced cancer or a blood cancer like leukemia.
Addressing Common Challenges and Expanding Access
About half of NCI-Designated Cancer Centers now have AYA programs. These programs commonly address financial help, fertility preservation, and school and career issues. City of Hope Children’s Cancer Center AYA program focuses on peer support, connecting AYAs with shared experiences through online groups, camps, and in-person meetups.
Emily Tonorezos, M.D., M.P.H., director of NCI’s Office of Cancer Survivorship, identifies cost as a significant barrier to establishing and maintaining AYA programs. NCI is funding studies that leverage technology, such as web-based resources for coping with distress and managing symptoms, to potentially lower costs and expand access.
Long-Term Survivors Diagnosed as AYAs
A study published in the Journal of the National Cancer Institute estimates that over 2 million people in the United States are long-term survivors of cancer diagnosed and treated during their AYA years. This population has distinct health risks and challenges compared to those treated as children or older adults, necessitating tailored research and healthcare planning.
Despite growing support for AYA cancer programs, many patients will still be treated at hospitals without such resources. Experts advise AYAs to advocate for themselves by asking questions about treatment effects on fertility, financial resources, and clinical trial options. Seeking a second opinion is also encouraged to ensure effective treatment plans that prioritize both quality of life and important personal considerations.
