Although adolescents and young adults (AYA) have been recognized as a unique patient population for nearly 30 years, their survival rates for certain types of cancers have stagnated.
On one hand, AYAs, whose age range spans from 15-39, have experienced robust, five-year survival rates (>~90%) for Hodgkin’s lymphoma, testicular germ cell tumors and melanoma. On the other hand, the survival rates for AYAs diagnosed with leukemia, bone and brain tumors hover between the mid-60s and low-70s.
“Dietary risk factors, alcohol use and tobacco consumption were the main risk factors for top early-onset cancers in 2019,” the researchers – from Zhejiang University School of Medicine in China, Harvard University in the US and the University of Edinburgh in the UK, among other institutions – wrote in their study.
Clinical trials are one of several avenues that can improve poor survival rates via the development of newer and improved therapies, but only 2–14% of all AYAs enroll in a clinical trial, according to a February 2023 article in the Current Opinion in Pediatrics.
When diagnosed with cancer, AYAs, as a group, are simultaneously confronted by challenges with independence and dependence to their family, financial strain and toxicity, and an interruption in their professional development at school or within the workforce.
These transitional challenges extend into their clinical ones as well, as AYAs find themselves caught between the pediatric and adult worlds of care.
Another new study points out that from 1990 to 2019, new cancer cases among young adults increased by about 79% overall, according to BMJ Oncology.
Stuck between two worlds
About 90,000 AYAs are diagnosed every year with cancer in the United States, which makes up roughly 4% of the total number of new diagnoses annually. According to the National Cancer Institute, young adults diagnosed with cancers more typically seen in children, such as brain tumors, leukemia, osteosarcoma or Ewing sarcoma, are best treated by a pediatric oncologist who more frequently sees those types of cases.
But the perfect pairing between oncologist and patient doesn’t always happen.
Age can play a significant role during treatment for AYAs, including if they can be enrolled in a clinical trial or not. Depending on which type of provider an AYA sees, there is also a stark difference in the way pediatric and adult clinicians embrace and utilize clinical trials.
“Within pediatric oncology, the culture is to offer every patient the opportunity to participate in a clinical trial,” says Jennifer Levine, MD, MSW, medical director of Survivorship and Supportive Care at Children’s National Hospital in Washington, D.C.
“Almost every pediatric program, unless they truly do not have the financial resources, attempt to have all relevant trials open to offer them to the right patient, no matter how rare their cancer is.”
She also explains that most pediatric programs belong to a grouping of other pediatric programs, such as the Children’s Oncology Group, which offer their patients access to the same clinical trial for a specific type of cancer.
If AYAs get lumped into the adult patient category, they are less likely to be enrolled in a clinical trial.
“Enrollment in clinical trials in the adult world is much lower than pediatric oncology, chiefly due to the comparatively much larger number of trials, combined with the variety of settings adults can be seen in and whether that hospital has the resources to participate in a trial,” says Dr. Levine.
Because of the high variation in the types of settings adults can be treated in, and whether those hospitals participate in clinical trials, patients may not be offered or aware of clinical trial offerings.
Overwhelming information
When patients are treated in an adult setting, they and their providers have a nearly impossible challenge to figure out if and what clinical trial would be appropriate for their care. Without the infrastructure to support and guide patients toward a clinical trial, it would be overwhelming for clinicians to conduct exhaustive research on what’s available.
Rose Wang was a caregiver for her late-husband Robert Ringdahl, who died from metastatic melanoma. Despite being well-educated, Wang explains that when he was diagnosed in 2019, they were “cancer illiterate,” not knowing the difference the standard of care and a clinical trial could make in his treatment journey.
After Ringdahl died, Wang started 1104 Health, a company that aims to make it easier for all patients, including AYAs, to become better educated about relevant clinical trials for their disease type.
“There are 40,000 active cancer clinical trials in the U.S. right now,” she says. “Guess how many there are, say, for non-small cell lung cancer? 900. That’s overwhelming.”
Eugene Hwang, MD, chief of the Division of Oncology at Children’s National Hospital, says that the experience Wang and her husband had is not all that uncommon.
“A lot of variability in clinical trial access depends on how comfortable your oncologist is with enrolling patients in clinical trials, as well as executing them,” he says. “On the patient side, the knowledge of options and the availability of those options are major barriers to entry, compounded by the emotional distress of the timeframe to make choices about what to do. It’s hard for anyone to be effective in that situation.”
Location and costs
Should AYAs find themselves at a community cancer treatment site, it’s likely that site won’t have open clinical trials relevant to them. They’re then faced with a choice some of them don’t know they’re even making: stay where they are and get standard of care treatment or seek out a hospital, such as an academic medical center, where they would be offered access to a clinical trial.
In the event they find such a cancer center, Michael Roth, MD, an associate professor of pediatrics at The University of Texas MD Anderson Cancer Center, says that is only one of several barriers AYAs would subsequently have to face.
“Many of the challenges focus on the local availability, or lack thereof, of clinical trials and the potential difficulty with, and costs of, travel to trials,” he says. “Having to take off work or school can be challenging as well.”
This is where the unique challenges for AYAs around financial means, school or career interruptions and the needs for social support intersect with where and how they can participate in a clinical trial.
Despite AYAs being a recognized unique patient group for three decades, there’s been relatively little research that seeks to understand why AYA participation in clinical trials is so low and even less research on the ways to increase enrollment in clinical trials, according to the Current Opinion in Pediatrics article.
Dr. Roth believes that more cancer sites need to open more trials that are relevant to the AYA community. He also believes that hospitals should offer the opportunity for AYAs to participate in trials remotely through telehealth visits, while getting their lab work and imaging done close to home.
These are two straightforward steps hospitals can take now to increase access to clinical trials. In time, more research, more advocacy and a commitment to responding to AYAs’ needs can move the needle on AYA survival rates.
