Compared to the general population, people who have survived cancer at any point in their lives tend to be at higher risk of certain complications and overall early mortality. A recent study published online ahead of print in Cancer finds that individuals diagnosed with cancer when they were adolescents or young adults (between the ages of 15 and 39)-a population historically less studied than those diagnosed as young children or older adults-were at a significantly higher risk of death from something other than cancer decades after their diagnosis (2019; https://doi.org/10.1002/cncr.32063).
The research is significant because it's one of the first studies to investigate this question of mortality risk from non-cancer causes in the adolescent and young adult population, according to the study authors.
In an editorial accompanying the research, Robert J. Hayashi, MD, Professor of Pediatrics in the Division of Pediatric Hematology/Oncology at Washington University School of Medicine, argues that the new data illustrate why more research is needed to better understand the late effect of anti-cancer treatment in this population of survivors, and the particular long-term risks they have (2019; https://doi.org/10.1002/cncr.32064).
"To date, there's relatively little published data about the complications that may be unique to this particular [adolescent and young adult] age group," Hayashi told Oncology Times.
The data shows that this population is not only at increased risk of early death, but likely for other long-term side effects because of having cancer. "We should not be presumptuous that the scope of problems that young children experience or the scope of problems that older adults experience are readily transferrable to this age group," Hayashi said. "I think there's something unique about their problems."
Here's what else Hayashi said about what research he thinks is needed in this cancer survivor population, what steps are needed to change outcomes for these individuals, and why he calls this gap in research "a new frontier."
1 What are some of the key questions that future research needs to answer?
"First of all, there would be utility in forming more structured, long-term continuity clinics for this population. So-called 'late effects clinics' have been well-established in pediatrics for many years. They're beginning to take hold in adult oncology. And I think there needs to be a culture for oncologists to both support and transition patients to survivorship clinics where there is expertise on potential complications so that we can start to assemble larger populations that would be readily available for further investigation.
"These clinics serve multiple purposes. They provide a service to the patient in terms of giving them education and in terms of maintaining their own wellness and [managing] their risks for subsequent complications. They also give clinicians insights in terms of potentially the unique features of a population that has been relatively understudied.
"If we're successful at the national level assembling these patients into specialized clinics, I think we'll see insights into what are going to be the most obvious and pertinent questions for this group.
"And then we need to start to develop research groups that specifically focus on this age population. The two kind of go hand-in-hand because you can't really do research unless you have a critical number of patients, and it's difficult to assemble these types of populations [to study] if you don't have some mechanism to assemble them and study them systematically."
2 What are the challenges of pursuing this research and moving the needle to actually answer these types of questions?
"Funding is an issue. I think developing infrastructure and networks of survivorship clinics to assemble these populations [is an issue]. I think there needs to be an assemblage of investigators who have an interest and can commit time to start to network together and develop standardized workflows. I think they're going to be very important because the more fragmented the evaluations of the patients, the more difficult it is to try to discern what is the true prevalence of complications of this population.
"To the extent that clinicians who serve this population can learn from the past experiences from how both pediatric oncologists and some of the adult and older populations are beginning to advance, they can hopefully leapfrog on those experiences and establish the momentum, so they can then move their investigation forward.
"And I think what is going to be very important is that we're not presumptuous about what to expect. There are many features of this population that makes them very unique.
"One of the aspects of labeling this as a new frontier is not just the population, but also the rapidly evolving anticancer therapy that's developing with newer targeted therapies. We have whole classes of agents that literally have not been used long enough to know what the long-term toxicities are. So there's going to be a great need to further investigate that, not just for the adolescent and young adult population, but for all populations."
3 What's the bottom-line takeaway message about this new frontier in adolescent and young adult cancer survivorship care?
"We are obviously moving to an age in which winning the battle of cancer is now becoming a much more realistic and prevalent success story, and we can't lose sight of the fact that our obligations to the patient extend beyond achieving a cure for their primary malignancy. As clinicians who are responsible for administering these therapies, we need to at least facilitate access to care, so that [patients] not only remain cancer-free but that they are able to have a long and also functional life."