AYA Patients Are Represented in Clinical Trials, But Survival Outcomes Still Lag


Adolescent and young adult patients are more represented than previously expected in clinical trials. However, their outcomes still lag behind the younger and older populations.

Experts have previously thought that adolescent and young adult (AYA) patients with cancer were underrepresented in clinical trials. However, recent research of more than 400 clinical trials conducted by the SWOG Cancer Research Network Group of the National Cancer Institute (NCI) demonstrates that this may not be the case.

A total of 8.4% of patients enrolled in clinical trials between 1996 and 2020 were within the AYA age range (15-39) – a high percentage considering only about 3.8% of adults in the United States are AYAs.

“We were surprised to find representation of adolescent and young adult patients to be as high as it was,” said Joseph Unger, a SWOG biostatistician and health services researcher at the Fred Hutchinson Cancer Research Center and the lead author of the study, in a statement. “AYA patients are consistently regarded as being underrepresented in adult clinical trials.”

Clinical trials with the highest AYA enrollment by percentage tended to be for blood cancer diseases. They were:

  • Hodgkin’s lymphoma (67.6% of participants were AYAs)
  • Acute lymphocytic leukemia (51.6%)
  • Acute promyelocytic leukemia (37.1%)

In the population of 84,219 patients enrolled within the study years, 7,109 were AYAs. Overall, trial participants tended to be younger than the average age of people with cancer and individuals over 65 were underrepresented.

Additionally, the AYA population on clinical trials tended to be more racially and ethnically diverse than older patients on trials, with 25% of participating AYAs in a racial or ethnic minority group. For patients over 40, only 17.2% of enrolled patients were minorities.

“The greater diversity among adolescent and young adult patients is consistent with population trends more broadly,” Dr. Unger said. “If these trends represent a greater willingness on the part of diverse populations to participate in trials, this could be promising for improving diversity in trials in future years.”

Despite the surprisingly higher amount of AYA patients enrolled in trials, they have not seen the same survival improvements that their older and younger counterparts have. Between 1975 and 2014, survival for patients over the age of 40 or pediatric patients has increased about 0.9% per year, while AYA survival increased only 0.5% yearly.

Still, more needs to be done – and more collaboration needs to happen – to continue to move the needle on improving AYA cancer outcomes.

“It will still be important for the groups to collaborate going forward,” Unger said.

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