Mayo Clinic Cancer Center launches program for adolescents and young adults

Nov. 20, 2021

Allison C. Rosenthal, D.O., Hematology and Oncology at Mayo Clinic's campus in Phoenix/Scottsdale, Arizona, is uniquely qualified to understand and lead a program addressing cancer care needs for the adolescent and young adult (AYA) population, those diagnosed between ages 15 and 39.

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

Dr. Rosenthal empathizes with the challenges of navigating cancer in this age group because she experienced a cancer diagnosis as a young adult. Following 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, she benefitted from connecting with a peer diagnosed with cancer whom she met through a connection of her parents. Having someone to relate to through treatment and into survivorship was invaluable, she says.

Specialized care for AYAs

Click here for an infographic about specializing care for AYA patients.

Today, Dr. Rosenthal advocates for attention to the distinct needs of the AYA population. She, along with Wendy A. Allen-Rhoades, M.D., Ph.D., her counterpart in Pediatric Oncology at Mayo Clinic's campus in Rochester, Minnesota, has championed 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 concept in cancer care — that those in this age group haven't seen gains in survival comparable to those seen in children or other adult age groups and thus would benefit from specially designed programs to meet their unique needs.

"Having cancer when you're 22 is not the same as having it when you're 70," says Dr. Rosenthal. "We need to acknowledge that the needs are different in order to get the best possible outcomes."

Specific issues for cancer care in this population

Numerous factors point to a need for specialty AYA cancer care. While some of these patients receive care in pediatrics, the majority are cared for in adult cancer systems. However, Dr. Rosenthal explains patients in the AYA population don't fit well with either patient population, as these patients have distinct biology, clinical outcomes and psychosocial needs. For instance, AYA patients may be students in high school or college, living independently, caught between losing coverage under parental medical insurance and finding their own, and starting families. Fertility also can be impacted by cancer and its treatment, making counseling imperative. AYA patients may 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. "They are a vulnerable, underrecognized, underserved group experiencing equity issues," says Dr. Rosenthal. "Serving this group's needs is part of addressing issues of diversity and inclusion."

The minority of AYA patients participate in clinical trials; however, a dedicated AYA program has been shown to improve enrollment. Reasons for lagging enrollment include lack of available trials, clinical trial education gaps and life perspectives.

Opportunities to serve the AYA cancer population

Dr. Rosenthal sees the formation of 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 pertinent because cancer incidence in this population is increasing, rising nearly 30% from 1973 to 2015, 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 prevalent in the AYA population: blood, gastrointestinal, skin and breast.

In Mayo Clinic's AYA program, Dr. Rosenthal anticipates that a navigator will perform a comprehensive assessment for each patient to identify the patient's needs as well as facilitate adherence to treatment and follow-up. She also plans to address comprehensive 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 survive cancer experience severe or life-threatening conditions, and 23% have three or more chronic health conditions.

Besides improving timely diagnoses and access to care and follow-up, Dr. Rosenthal wants to ensure that AYA patients with cancer diagnoses know they're not alone by facilitating a peer support group that meets regularly.

AYA program referrals

Enrollment in the formal AYA program will begin in 2022, though patient referrals for those in this age group may occur anytime.

Both internal and external bodies will evaluate the Mayo Clinic Cancer Center AYA program. Dr. Rosenthal says 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 comprehensive care for patients in the AYA age group and avoid care lapses, Dr. Rosenthal says.

For more information

Scott AR, , et al. Trends in cancer incidence in US adolescents and young adults, 1973-2015. JAMA Network Open. 2020;3:e2027738.

Miller K, et al. Cancer statistics for adolescents and young adults, 2020. CA: A Cancer Journal for Physicians. 2020;70:6:443.

Oeffinger KC, et al. Chronic health conditions in adult survivors of childhood cancer. The New England Journal of Medicine. 2006;355:1572.

Reed D, et al. Creating an adolescent and young adult cancer program: Lessons learned from pediatric and adult oncology practice bases. Journal of the National Comprehensive Cancer Network. 2014;12:1409.