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AYA Resources

National Comprehensive Cancer Network (NCCN) Guidelines define an adolescent and young adult (AYA) oncology patient as an individual between 15 and 39 years of age at the time of initial diagnosis. These guidelines state that AYAs develop different cancers than other age groups; this patient population also has unique needs around treatment and survivorship.

According to NCCN more than 700,000 AYAs are diagnosed with cancer annually in the U.S., accounting for 5 out of 100 new cancer diagnoses and 2 out of 100 cancer deaths.

The American Cancer Society calls attention to issues that can uniquely affect young adults with cancer including:

  • Delays in diagnosis
  • Communication challenges with providers unaccustomed to treating patients in this age range
  • Financial issues, including lack of or limited insurance coverage
  • Social and emotional concerns specific to adolescents and young adults
Several recent studies report a continued increase in diagnosis of colorectal cancer in individuals younger than age 50 in the U.S., and that younger adults are being diagnosed with more advanced disease.1-3

A recent observational study by Sung and colleagues found increased risk of obesity-linked cancer in the younger adult population. Researchers found that individuals born around 1985 had a 2 to 5 times increased risk for kidney, gallbladder, pancreatic, and endometrial cancers—almost double the risk for colorectal cancer and about 1.5 times the risk for multiple myeloma--compared to those born around 1950.

Sources:

1. Virostko J, Capasso A, Jankeelov TE, Goodgame B. Recent trends in the age at diagnosis of colorectal cancer in the US National Cancer Data Base, 2004-2015. Cancer. 2019;125(21):3828-3835.
2. Siegel RL, Miller KD, Fedewa SA, et al. Colorectal cancer statistics, 2017. CA Cancer J Clin. 2017;67:177-193.
3. American Cancer Society: Key statistics for colorectal cancer. Available at cancer.org/colon-rectal-cancer/about/key-statistics.html. 
4. Sung H, Siegel RL, Rosenberg PS, Ahmedin J. Emerging cancer trends among young adults in the USA: analysis of a population-based cancer registry. Lancet Pub Health. 2019;4(3):PE137-E147.


Explore resources from ACCC to help cancer care providers better serve the unique needs of AYA patients with cancer: 

From Oncology Issues

  •  The In-Betweeners: A Focus on Young Adults with Cancer
    Kristin S. Donahue, MSN, RN, OCN, et al.
    Our team of young adult administrators quietly agreed that we were not doing all that we could for our young adult cancer patients. This session was our call to action. When we returned to our program, our team pledged do more for this often forgotten about patient population—the In-Betweeners.
  •  Cancer Care Considerations for Sexual and Gender Minority Patients
    Mandi L. Pratt-Chapman, MA, PHD, and Jennifer Potter, MD
    Americans who identify as a sexual and gender minority (LGBTQI) have unique healthcare needs that are not being met by most healthcare providers. Discover how improvement in communication, provider education, screening recommendations, and more can help bridge disparities in care.
  •  Improving Fertility Preservation Discussions for Adolescent and Young Adult Male Oncology Patients
    Jacqueline N. Casillas; Roy L. Kao; Joshua Macadangdang; Emma Lidington; Melody S. Hsu; Hilary Gan; Gavin D. Roach; Shivani Upadhyay; Neha G. Vaghasia; Joanna J. Gell; Elizabeth A. Van Dyne; Ning Li; Grace Sund; Theodore B. Moore
    Fertility preservation is an increasing concern for adolescent and young adult (AYA) patients with cancer. However, not all newly diagnosed males discuss fertility preservation with a healthcare provider before treatment. This quality improvement project describes the oncofertility program development that was part of a larger goal to develop an AYA oncology program at our institution, the University of California Los Angeles (UCLA) Mattel Children’s Hospital.
  •  A Medical Home for Adolescents and Young Adults with Cancer
  •  Developing a Community Oncofertility Program
  •  Closing the Gap: Developing an AYA Cancer Survivorship Center
  •  Views: Bike Loud
    David Margolies
    Too often, teen and young adult cancer patients are treated in pediatric hospitals designed with young children in mind, or in adult hospitals alongside elderly cancer patients. These patients often feel like they are receiving treatment in a “no man’s land” where their particular needs are not supported.

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