Establishing an AYA Program at Your Cancer Center: APPs Take the Lead

You are currently viewing Establishing an AYA Program at Your Cancer Center: APPs Take the Lead

Maggie Aime, MSN, RN

Part 3 of a three-part series on caring for adolescents and young adults in oncology

Cancer is expected to affect an estimated 84,100 adolescents and young adults (AYAs), aged 15 to 39, in the United States in 2024.1 These patients face specific needs that traditional cancer care models often struggle to address, including fertility preservation, relationship dynamics, educational disruptions, and financial toxicity.2,3,4

Additionally, AYA cancer care requires specialized attention due to variations in cancer types, risk factors, biological features, and treatment responses.5 Despite improved survival rates, AYAs continue to report significant unmet physical, psychosocial, and practical needs during and after cancer treatment.1

Advanced practice providers (APPs) are uniquely positioned to lead the development of AYA programs in their cancer centers. With their combination of clinical expertise and care coordination experience, APPs often serve as bridges between specialties and services. Dedicated AYA programs have been shown to improve clinical trial enrollment, reduce unmet needs, and ensure more consistent delivery of age-appropriate care.6,7 However, many cancer centers still lack formalized AYA programs. This creates an opportunity for APPs to take the lead in filling this critical gap.

Laying the foundation

Establishing a successful AYA program starts with conducting a comprehensive needs assessment to understand the institution’s current landscape.8 This foundational work helps identify gaps in care, available resources, and potential barriers to implementation.

Begin by analyzing your AYA population demographics. Cancer registry data can reveal the number of AYA patients diagnosed and treated annually. They can also provide important details about their ages, cancer types, insurance coverage, and where they live—all crucial information for planning your program.7

Next, an evaluation of existing services can identify gaps in care delivery. Review current support services, such as fertility preservation, psychosocial support, and financial navigation. Understanding how AYAs move through pediatric or adult settings and how these areas coordinate care offers important insights. Consider surveying current and former AYA patients about their experiences and unmet needs.7,9

Available resources and constraints in the institution also help determine the program’s design. Take inventory of potential team members already working with AYA patients and identify departments, such as social work and behavioral health, that could contribute to the program’s development. Physical space limitations and existing workflows that might impact the program’s implementation should be considered.9

Finally, connect with and gather input from key stakeholders across your institution. Insights from providers from both pediatric and adult oncology, nursing leadership, social workers, and other supportive care staff can help identify potential champions, resistance points, and opportunities for collaboration. Consider forming an advisory group that includes both healthcare providers and AYA patient representatives and/or survivors to guide strategic planning and implementation.10

Building leadership support

A successful AYA program depends on leadership buy-in. Without strong administrative support, the program may struggle to obtain the necessary resources, staffing, and institutional backing needed for long-term sustainability. Start by aligning your program’s goals with your institution’s strategic priorities. Whether your organization focuses on expanding clinical trial enrollment, improving patient satisfaction scores, or enhancing supportive care services, highlight how a dedicated AYA program directly contributes to these objectives.9,10

This requires careful preparation. When meeting with leadership, present data illustrating the current gaps in AYA care and the potential impact of a dedicated program. Focus on metrics that matter to administrators, such as patient retention, referral patterns, and opportunities for program growth. Success stories from established AYA programs, particularly their improved clinical outcomes and patient satisfaction scores, can add weight to your proposal.7,9

Essential to leadership support is the continued demonstration of value through data. Be prepared to outline to leadership how you plan to track and demonstrate the program’s value. Propose key metrics for measurement, such as potential improvements in AYA consultations, clinical trial enrollment rates, and patient satisfaction scores. Discuss methods for documenting the impact of early interventions and patient surveys to gather feedback. Having a clear plan for evaluating the program’s effectiveness can help leadership understand how success will be measured and validated over time.7,9

The champions identified during your initial assessment can now play pivotal roles in building broader institutional support. Providers who frequently treat AYA patients often become natural advocates. They can speak to the daily impact on patient care, while department leaders who have shown interest can help advance the proposal through administrative channels. Together, these champions help strengthen the case for institutional support and facilitate collaboration across specialties.9,10

Identifying the core components of an AYA program 

At the heart of an effective AYA program is a well-integrated multidisciplinary team. APPs naturally emerge as leaders within the AYA care team. Their clinical knowledge and understanding of hospital systems and flows position them to coordinate care effectively across departments. Many successful AYA programs feature APPs in key roles, such as program director or clinical care coordinator, where they can influence both patient care and program development. APPs’ ability to build trust with patients and families can also lead to increased clinical trial participation and greater engagement in the program.

Initial staffing often begins with a program coordinator or AYA support specialist who can serve as a consistent presence throughout the patient’s journey, helping them understand their diagnosis and treatment options, connecting them with needed resources, and ensuring access to appropriate support.11

Additionally, comprehensive AYA care encompasses several key services. Collaborations with social workers, financial counselors, dietitians, and community organizations help create a robust network of support for AYA patients throughout their cancer journey.7,11 Dedicated psychosocial services help patients navigate the emotional challenges of cancer treatment during young adulthood. Fertility preservation counseling, particularly critical for this age group, requires early intervention and close collaboration with reproductive specialists.9

Survivorship care plays a vital role in supporting AYAs and should not be overlooked. Regular assessment of late effects, surveillance for secondary cancers, and guidance on health promotion help survivors transition to life after treatment.2,11

AYAs benefit greatly from peer connections, so it’s important to create support groups and communities where they can share experiences with others who understand their unique challenges. The success of these services often depends on strong partnerships both within and outside the institution. As you learn more about your specific AYA population through surveys and feedback, you may identify additional program components that address unique needs within your institution.

Funding your AYA program

As with any major initiative, financial planning is the backbone of a sustainable AYA program. Yet, cost often presents a significant barrier since AYA programs may generate limited direct revenue while requiring dedicated staff and resources.7,10,12 Institutions often provide core funding. Still, most successful programs combine support from multiple sources. For example, Teen Cancer America, a foundation focused on young adult cancer care, offers grant funding to help launch these programs. 

Some cancer centers have built successful fundraising programs through dedicated AYA funds, often growing from patient and family advocacy efforts. At Massachusetts General Hospital, a young patient named Justin inspired a successful fundraising event that provided seed money for their AYA program. Similarly, the University of North Carolina’s AYA program benefited from the Be Loud! Sophie Foundation, established by a patient’s family.7 These initiatives can help launch core program elements and provide ongoing support for AYA services. The goal is to find fundraising approaches that fit naturally with your institution’s culture and community.

Additional funding opportunities can also be found through external grants and community partnerships. Both research grants and local organizations can help strengthen the program in different ways. For example, quality improvement grants might fund a study of AYA clinical trial enrollment patterns, while local partnerships could support groups or educational programs.7 

Building long-term sustainability begins with focused and strategic growth. Starting small can help the program demonstrate clear results in key areas.7 Data on patient outcomes and satisfaction can help make the case for more institutional support and funding. Success metrics such as patient retention and clinical trial participation can naturally open doors for program expansion.

Taking the lead

The need for specialized AYA cancer care continues to grow, yet many cancer centers still lack formal programs to serve this unique population. APPs serve as bridges throughout the AYA cancer journey, often being the first to recognize and respond to emerging patient needs. 

Establishing an AYA program, while complex, becomes manageable through dedication, careful planning, and a phased approach. Given their central role in AYA care delivery, APPs bring the perfect combination of clinical knowledge and care coordination expertise to lead these initiatives. 

This vision is already becoming a reality, with APPs across the country taking central roles in establishing AYA programs. At Massachusetts General Hospital, nurse practitioners actively involved in building and growing their AYA program highlight that passion and recognizing the need are fundamental first steps toward creating comprehensive AYA care.

APPs, consider these initial steps to launch an AYA program in your institution:

  • Assess your institution’s AYA patient population and map current services to identify gaps in care.
  • Identify and build relationships with key stakeholders across pediatric and adult oncology departments.
  • Form an advisory group including healthcare providers and AYA patient representatives.
  • Align the program’s goals with institutional priorities and prepare data to support your proposal.
  • Research funding opportunities through foundations like Teen Cancer America, identify potential funding sources within your institution, and consider community partnerships.
  • Create a network of champions who can advocate for the program.
  • Develop a plan for tracking program metrics and patient outcomes.
  • Stay connected with established AYA programs for guidance and support.
  • Start with focused initiatives that demonstrate clear value and measurable outcomes.
  • Be persistent and patient. 

Go here to read part 1 of this series, Caring for Adolescents and Young Adults (AYA) in Oncology 

Go here to read part 2 of this series, A Model for Success: The AYA Cancer Program at Mass General Cancer center

 

Maggie Aime, MSN, RN, is a health, wellness, and medical personal finance writer with over 25 years of experience in healthcare, including working in oncology in both non-clinical and nursing roles. With a passion for education, she draws on her diverse background across nursing specialties, oncology case management, revenue management, and utilization review to create empowering content.

References

  1. Cancer among adolescents and young adults (AYAs). (n.d.). National Cancer Institute Surveillance, Epidemiology, and End Results Program https://seer.cancer.gov/statfacts/html/aya.html
  2. 2. Jin, Z., Griffith, M. A., & Rosenthal, A. C. (2021). Identifying and meeting the needs of adolescents and young adults with cancer. Current Oncology Reports, 23(2). https://doi.org/10.1007/s11912-020-01011-9
  1. Skinner, A., Buhlmann, M., Fridley, B. L., Reed, D. R., Vicedo, D., & Mason, N. T. (2023). Pilot study in investigating material financial toxicity markers by age in cancer patients. Journal of Adolescent and Young Adult Oncology, 12(1), 34–42. https://doi.org/10.1089/jayao.2022.0011
  1. Mack, J. W., Fisher, L., Kushi, L., Chao, C. R., Vega, B., Rodrigues, G., Josephs, I., Brock, K. E., Buchanan, S., Casperson, M., Cooper, R. M., Fasciano, K. M., Kolevska, T., Lakin, J. R., Lefebvre, A., Schwartz, C. M., Shalman, D. M., Wall, C. B., Wiener, L., & Altschuler, A. (2021). Patient, family, and clinician perspectives on end-of-life care quality domains and candidate indicators for adolescents and young adults with cancer. JAMA Network Open, 4(8). https://doi.org/10.1001/jamanetworkopen.2021.21888
  2. Miller, K. D., Fidler-Benaoudia, M., Keegan, T. H., Hipp, H. S., Jemal, A., & Siegel, R. L. (2020). Cancer statistics for adolescents and young adults, 2020. CA: A Cancer Journal for Clinicians, 70(6), 443–459. https://doi.org/10.3322/caac.21637
  3. Coccia P. F. (2019). Overview of adolescent and young adult oncology. Journal of Oncology Practice, 15(5), 235–237. https://doi.org/10.1200/JOP.19.00075
  4. Haines, E. R., Lux, L., Stein, J., Swift, C., Matson, M., Childers, J., Kleissler, D., Mayer, D. K., Steiner, N., Steiner, L., Rosenstein, D., Gold, S., & Smitherman, A. B. (2023). Developing a comprehensive adolescent and young adult cancer program: Lessons learned from 7 years of growth and progress. Journal of Adolescent and Young Adult Oncology, 12(6), 868–878. https://doi.org/10.1089/jayao.2023.0015
  5. Haines, E. R., Lux, L., Smitherman, A. B., Kessler, M. L., Schonberg, J., Dopp, A., Stover, A. M., Powell, B. J., & Birken, S. A. (2021). An actionable needs assessment for adolescents and young adults with cancer: The AYA Needs Assessment & Service Bridge (NA-SB). Supportive care in cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 29(8), 4693–4704. https://doi.org/10.1007/s00520-021-06024-z
  6. Reed, D., Block, R. G., & Johnson, R. (2014). Creating an adolescent and young adult cancer program: Lessons learned from pediatric and adult oncology practice bases. Journal of the National Comprehensive Cancer Network : JNCCN, 12(10), 1409–1415. https://doi.org/10.6004/jnccn.2014.0138
  7. Haines, E., Asad, S., Lux, L., Gan, H., Noskoff, K., Kumar, B., Roggenkamp, B., Salsman, J. M., & Birken, S. (2022). Guidance to support the implementation of specialized adolescent and young adult cancer care: A qualitative analysis of cancer programs. JCO Oncology Practice, 18(9), e1513–e1521. https://doi.org/10.1200/OP.22.00063
  8. Surujballi, J., Chan, G., Strahlendorf, C., & Srikanthan, A. (2022). Setting priorities for a provincial adolescent and young adult oncology program. Current Oncology (Toronto, Ont.), 29(6), 4034–4053. https://doi.org/10.3390/curroncol29060322
  9. Reynolds, S. (2024). Program connects adolescents and young adults to quality cancer care. National Cancer Institute. https://www.cancer.gov/news-events/cancer-currents-blog/2024/aya-cancer-program-expands-quality-care