Meeting the unique needs of adolescents and young adults with cancer

By Mayo Clinic staff

Allison Rosenthal, D.O., a Mayo Clinic hematologist-oncologist, is uniquely qualified to understand and lead a program addressing the needs of adolescents and young adults (AYAs), those between ages 15 and 39, with cancer.

"I have some experience sitting in that seat — with being in their shoes," she says.

Dr. Rosenthal empathizes with the challenges of facing cancer in this age group because she experienced a cancer diagnosis as a young adult. After the diagnosis, her physician referred her to Mayo Clinic for consult, and then she received care with a physician in her community.

Dr. Rosenthal says that after her diagnosis, connecting with a peer who was also diagnosed with cancer was helpful. Having someone to relate to through treatment and into survivorship was invaluable, she says.

Today, Dr. Rosenthal advocates for the unique needs of the AYA population. She, along with Wendy Allen-Rhoades, M.D., Ph.D., a Mayo Clinic pediatric oncologist, have championed the development of a Mayo Clinic Cancer Center program for this patient group at Mayo Clinic's locations in Arizona, Florida and Minnesota.

Dr. Rosenthal speaks about an AYA gap in cancer care — people with cancer in this age group haven't seen gains in survival like the gains seen in children or other adult age groups. AYA patients would benefit from specially designed programs to meet their unique needs.

Specific issues for AYA cancer care

Many factors point to a need for specialty AYA cancer care. While some AYA people with cancer receive care in pediatrics, the majority are cared for in adult cancer systems. People in the AYA group don't fit well with either patient population.

These patients have distinct biology, clinical outcomes and psychosocial needs. For instance, AYA patients may be students in high school or college, living on their own, caught between losing coverage under parental health insurance and finding their own, and starting families. In fact, fertility can be impacted by cancer and its treatment, making conversations about fertility preservation very important.

AYA people with cancer may also have to manage the feeling of being different from their peers and can face isolation or difficulty navigating relationships. Without the widespread availability of age-specific programs, AYAs face issues with access to appropriate care.

The majority of AYA patients don't participate in clinical trials because of the lack of available trials, gaps in education about clinical trials and life perspectives. A dedicated AYA program has been shown to improve enrollment in these trials.

Opportunities to serve the AYA cancer population

Dr. Rosenthal sees the AYA program at Mayo Clinic Cancer Center as an opportunity for leadership in education, clinical trials and support networks for this population. This is especially relevant because cancer incidence, or the number of new cancer diagnoses, in this population is increasing. From 1973 to 2015, cancer incidence for AYAs rose nearly 30%, according to a 2020 article in JAMA Network Open. In 2020 in the U.S., health care providers diagnosed 89,500 new cancers in AYAs, and 2% of all cancer deaths occurred in AYA patients. Certain types of cancers are more common in the AYA population: blood, gastrointestinal, skin and breast.

In Mayo Clinic's AYA program, Dr. Rosenthal anticipates that a navigator will perform a complete assessment for each patient to identify the patient's needs. This person can also help AYAs stick with their treatment and follow-up plans.

She also plans to address survivorship. For AYAs, five-year survival is 83% to 86% for all cancers combined, according to a Sept. 17, 2020, article in CA: A Cancer Journal for Clinicians — though it is significantly lower in some subtypes. A report by Oeffinger and colleagues in the Oct. 12, 2006, issue of The New England Journal of Medicine indicated that nearly a third of children and adolescents who do survive cancer experience severe or life-threatening conditions, and 23% have three or more chronic health conditions.

Besides improving timely diagnosis and access to care and follow-up, Dr. Rosenthal wants to ensure that AYA patients with cancer know they're not alone. She worked with Mayo Clinic oncology social worker Melody Griffith, MSW, LMSW, to organize a peer support group that meets regularly. For more information about the group, contact griffith.melody@mayo.edu.

AYA cancer program referrals

Enrollment in the formal AYA program will begin in 2022, though resources for this age group are available now at Mayo Clinic Cancer Center.

Both internal and external organizations will evaluate the Mayo Clinic Cancer Center AYA program. Dr. Rosenthal says Cancer Center leadership will assess program enrollment as one measure of success.

An article in the October 2014 issue of Journal of the National Comprehensive Cancer Network identified five areas of excellence for AYA cancer programs:

• Fertility counseling
• Clinical trial access
• Financial counseling and navigating health insurance
• Transition to survivorship services, and
• Psychosocial support.

Offerings in these arenas are crucial to provide complete care for AYAs with cancer to avoid gaps in care, says Dr. Rosenthal.