Dr Theresa Keegan: AYAs Continue to Be Underrepresented in Clinical Trials

There have been substantial efforts to increase both access to and participation in clinical trials among adolescents and young adults (AYAs), but their representation remains low, explained Theresa H.M. Keegan, PhD, MS, associate professor, hematology and oncology, University of California at Davis Comprehensive Cancer Center. 


How represented are adolescents and young adults in clinical trials?
Overall, AYAs, which are adolescents and young adults, and we typically define that as 15-39 years of age, are less represented in clinical trials than children. So, back in 2006, we reported that 14% of AYAs participated in clinical trials. This was using population-based data in the surveillance, epidemiology, and end results program. This is in contrast to children, where approximately 90% are treated at institutions with NCI-sponsored clinical trials, and as many as two-thirds participating in clinical trials. So, there’s pretty dramatic differences by age in terms of clinical trial participation.

Has representation changed over recent years?
So, not really, actually. Part of our goal in our education session was to look at changes over time. There’s been substantial efforts to increase both access to and participation for AYAs in clinical trials, and this is really because we’ve noticed less improvement in AYAs in survival over the past 30 years, and this has been attributed to lower participation in clinical trials, as well as a number of other factors.

So, our goal was to look to see if we have seen an increase in participation over time. We were able to do some work ourselves in population-based data and found that in 2012 and 2013, we saw a modest increase from 15% to 18%, and these were in acute lymphoblastic leukemia (ALL), Hodgkin, non-Hodgkin lymphoma patients and sarcoma patients. But really no significant increases over time.

There was a suggestion that there is an increased participation in ALL trials, and this has been noted by others. So, that may be the one exception--that for those patients, that there is some increase in trial accrual, and there has been a lot of attention given to adolescent and young adult ALL patients. But again, overall and in general, we don’t see increased clinical trial participation.
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