Adolescent and Young Adult Cancer: The Importance of Research to the AYA Community
Apr 03, 2019
The definition of the adolescent and young adult (AYA) cancer patient has evolved over time, but in the United States, it is defined as those diagnosed with cancer between ages 15–39 years. AYA patients are a unique population with regard to both their cancer and psychosocial needs.
Nearly 80,000 individuals aged 15–39 years are diagnosed with cancer every year, which is approximately eight times the rate of cancer diagnosed in children less than 15. Excluding homicide, suicide, and unintentional injury, cancer is the leading cause of death among adolescents and young adults.
Why is research in AYA oncology important?
The incidence of cancer in the AYA population has steadily increased over the last 25 years. Unfortunately, overall survival in these patients has not improved with time, especially when compared with the overall survival of younger children with cancer. Several theories have been offered to explain the lack of improvement in AYA survival, including lack of participation in clinical trials, as well as where patients are treated.
Some AYA patients are treated at pediatric facilities and others are treated at adult cancer centers or community hospitals. For certain types of cancer, it has been shown that AYA patients treated in a pediatric setting have superior outcomes than AYA patients treated in an adult setting. This may be due to therapeutic differences, including chemotherapy doses and difference in when of radiation therapy or surgery is used.
In addition, while many adult institutions offer trials to patients, they are often institution-dependent rather than part of a larger cooperative group, such as Children’s Oncology Group. Finally, it is estimated that as many as 90 percent of AYA patients may be treated at local community hospitals where physicians may be less familiar with their diseases.
Together, these factors may contribute to AYA patients' significantly lower rates of clinical trial participation and decreased overall survival. Even when studies are available for AYA patients, it has been shown that recruitment is much lower than in the pediatric age groups.
Why is AYA cancer detected later?
Diagnoses may be delayed because AYAs typically see themselves as invulnerable, causing them to ignore or minimize common cancer symptoms. May consider it psychosomatic, as “it must be in my head” or told by friends and family to “get over it.” AYAs may also be embarrassed to discuss symptoms of masses or symptoms pertaining to certain areas of their bodies like the testicles or breast area.
It has also been shown that as age in this population increased, lag time to seeing a physician, and ultimately, time to diagnosis also increased. Lag time is also related to quality of health insurance (those with public or no health insurance had longer lag times, ranging from weeks to months).
Lack of medical insurance has also been associated with delay in seeking medical care in the AYA population. As AYAs transition from schooling to seeking a career/job and age out of parent’s insurance, they may not prioritize their healthcare over other things to save money, waiting several months to see a practitioner for assessment of their symptoms.
In addition, medical providers tend to have low suspicion of cancer in this age group, and symptoms may be attributed to fatigue, stress or other common causes. As AYA oncology is a relatively new and emerging field when compared with other medical specialties, education in this domain is lacking and not generally a component of medical education for medical students and residents.
Bottom line: No matter your age, don’t ignore your body! If something feels different or you are concerned, make sure you visit a medical professional who can evaluate you appropriately.
Dr. Anthony Audino is a pediatric oncologist and a member of the Adolescent and Young Adult Program at Nationwide Children’s. His clinical and research interests include adolescent and young adult oncology, specifically solid tumors such as sarcoma and lymphoma. He has also piloted a year-long program, with grant support, for an adolescent and young adult outreach education program.
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