Brandon M. Hayes-Lattin, MD, FACP
Adolescent and Young Adult Oncology explores the unique physical, psychosocial, social, emotional, sexual, and financial challenges adolescents and young adults with cancer face. The column is guest edited by Brandon M. Hayes-Lattin, MD, FACP, Associate Professor of Medicine and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon.
Advances in more precise diagnostics for the early detection of cancer and in more effective cancer therapies have led to an unprecedented improvement in the number of cancer survivors in the United States, with more than 15.5 million cancer survivors alive today and predictions of more than 20 million by 2026.1 However, not all patients are benefitting from the gains made in cancer care. For adolescents and young adults with cancer (AYAs)—defined by the National Cancer Institute as those in the 15- to 39-year-old range—5-year survival rates have remained stagnant since 1975, and for individuals aged 30 to 34, survival rates have actually decreased.2
The reasons for this disparity in survival rates for AYAs are many and will take myriad approaches on several fronts to solve, including filling the gaps in the clinical and supportive care AYAs receive and the institution of a model of care for AYAs that is distinct from the models used in pediatric and adult medical oncology.
To successfully bridge the gap in oncology care for this patient population, say experts, will require a more patient-focused multidisciplinary approach and a new AYA oncology discipline of care, although more research is needed to determine the most effective comprehensive models of care that incorporate the uniquely diverse needs of AYA cancer survivors, according to Brandon M. Hayes-Lattin, MD, FACP, Associate Professor of Medicine and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon. Dr. Hayes-Lattin is also Guest Editor of The ASCO Post’s Adolescent and Young Adult Oncology column.
The ASCO Post talked with Dr. Hayes-Lattin about the gaps in oncology care for adolescent and young adult cancer survivors and how to fill those gaps to improve oncology care for this patient population and increase their survival rates.
Reasons for Disparity
Contributing factors to the worse outcomes for AYA survivors include a limited understanding of age-related differences in tumor biology, less adherence to prescribed therapy, delayed access to care, and lower participation rates in clinical trials. Are there other reasons why AYAs don’t fare as well as younger and older adult patients?
The short answer is we don’t know all the reasons for the differences in survival improvements for young adults compared to pediatric and older patients, but it probably is a combination of multiple factors, including the ones you listed. The biology of the disease in either older patients with a pediatric-type cancer or younger patients with an older adult–type cancer may well be different. And there are some pretty clear-cut examples of that.
It’s probably a big mix of things that are making the difference in survival rates in AYA patients. The real challenge for the oncology field is to sort out which of these components of care are the most important in survival disparity and whether they vary by disease so that we can design novel programs that would fix the problem.— Brandon M. Hayes-Lattin, MD, FACP
For example, young adult patients with acute lymphoblastic leukemia (ALL) more often present with poorer prognostic molecular or clinical features than children with ALL, and the same thing is true on the other end of the age spectrum: Young women with breast cancer more often present with histologic or endocrine features that put them in a poor prognostic group than older patients with the disease.
In addition to differences in biology, there are retrospective data showing that AYA patients with Ewing sarcoma, for example, who receive the same treatment as children with the same cancer, have different survival rates depending on whether they receive treatment in a pediatric or an adult cancer facility. There are also differences in the delivery of therapy between pediatric and adult hospital environments. Whether that has to do with the actual treatment regimen that is used or the ability of the adult cancer facility to help AYA patients not only adhere to treatment but give them appropriate follow-up care is unclear.
So it’s probably a big mix of things that are making the difference in survival rates in AYA patients. The real challenge for the oncology field is to sort out which of these components of care are the most important in survival disparity and whether they vary by disease so that we can design novel programs that would fix the problem.
Please talk about some of the unique characteristics of AYAs that may make them more complicated to care for than pediatric or older adult patients, such as their different levels of maturity and independence from parents; education, career, and personal relationship goals; and fertility and sexual concerns.
You are hitting on the highlights of what makes caring for AYAs different and challenging. I would sum up the issue as how utterly impactful a cancer diagnosis is in young adulthood. It is so disruptive to the normal developmental milestones of young adults, including establishing independence from parents, establishing a career, and starting a family, and interfering with these milestones can be devastating.
A young child with cancer is still under parental care and hasn’t launched into these independent transitions yet. These transitions may be delayed, but cancer has not fundamentally disrupted the process, as it does for a young adult. And while an older patient may have a career crisis when he or she gets a cancer diagnosis, most likely the person has a career track record to fall back on and can reengage in the workforce once treatment is completed.
Having your education or career interrupted when you are a young adult is so much more disruptive and life-altering. To me, that is the core difference between caring for pediatric and older adult patients and adolescent and young adult patients.
Bridging the Gap
How can the medical care gap between pediatric and older adult patients and AYA patients be bridged? What are the issues and the solutions?
Much of what is being discussed as potential causes and solutions to these problems is still hypothesis-driven, but there may be structural differences in the care-delivery system that are causing the disparity in survival rates. For example, the ratio of providers to patients tends to differ dramatically between the pediatric and adult cancer worlds, with the adult world often having fewer providers per patient than the pediatric world. The relatively greater availability of physicians, nurses, social workers, and other staff in a pediatric setting might be one structural difference that could explain how much support is available to AYAs and their caregivers to help them adhere to follow-up appointments and treatments.
Before we can say that with certainty, however, we need to investigate how strong the association is. For example, it may be true that there are larger numbers of staff caring for pediatric patients, but that alone may not be responsible for the survival differences. If that is the case, we shouldn’t be arguing for hiring more staff, because the problem may be differences in tumor biology instead.
The same is true for the other potential causes of survival disparity, such as treatment protocols for the different age groups. We need rigorous testing before we can know the answer. We are beginning to do such work in ALL, where we are evaluating pediatric-based treatment vs adult regimens in ALL patients up to age 40. It is not a randomized trial, so it is not the most rigorous way to answer this question, but it is a first step into that line of investigation.
Again, if it turns out that the treatment difference can be shown to have an impact on survival, then we will have the necessary tools to make a change. What’s challenging is that this kind of work takes time and patience.
Clinical Trial Representation
AYAs are generally not well represented in clinical trials. Is it because they are not being offered clinical trials or because they are not interested in participating in clinical trials?
This is another area that is under study, but it appears that AYAs are more often treated in community care settings, where there aren’t many clinical trial opportunities. For example, it is much more likely that a pediatric cancer patient is being cared for in an academic center, where there are many clinical trials available and where providers place a high priority on enrollment in clinical trials. An older patient is more likely to be treated in a community oncology practice, where the availability of clinical trials might be more limited and internal motivations to enroll in clinical trials are not the same.
Models of Care
There are different models of care used in pediatric oncology, which is more family-focused, and adult medical oncology, which is more disease-focused. Which model of care do you think would most benefit AYA patients?
I struggle to answer that question because, again, without hard evidence-based data to inform decisions about an appropriate care model for AYAs that takes into account tolerance to treatment, tumor biology, and psychosocial development, it is difficult to say what type of care model would bridge the gap in oncology care and make a difference in survival outcome.
We now have several initiatives to create AYA services that are very different from each other because they are not informed by a robust database of information, and that makes it difficult to proceed in one direction. As a result, the programs that get prioritized or funded are not necessarily the ones we know are going to have the biggest impact. But following the progress of these new models will allow us to answer these questions in the future.
Currently, do AYAs fall mainly into the more disease-focused model of care?
In most cancer centers, that is true—even for those that are in various stages of developing programs suited more to the needs of AYAs. Most of the time, the primary care of AYAs is based on disease-focused care, as opposed to having an oncology team expert in all AYA cancer types taking care of this patient population regardless of cancer type.
Most cancer centers have chosen to treat AYA patients with a diseased-based model of care and then bring AYA-type resources to that care, which might include novel collaborations. For example, acute leukemia medical teams on the pediatric and adult cancer service might choose to work together and jointly open trials for pediatric and AYA patients, while truly coordinating their care across the adult/pediatric setting, even though they are still functioning within a disease group. Or it may be that a breast cancer clinic has a list of providers with a special interest and expertise in young women with the disease, so even though the care is disease-based, it brings some AYA consideration to that disease-based team.
Do programs like Teen Cancer America, which provide specialized facilities in cancer centers for teens and young adults (see “Bridging the Gap Between Pediatric and Adult Oncology Care,” in the October 10, 2015, issue of The ASCO Post), help AYAs feel more comfortable during treatment and improve adherence to follow-up appointments after treatment is completed?
Yes, even without the kind of robust data I talked about earlier to determine the most effective evidence-based care for AYAs, patients who feel connected and comfortable in their hospital environment, including AYAs, are much more likely to complete their treatment and follow-up care. Programs like Teen Cancer America (www.teencanceramerica.org) provide that kind of positive environment, and their positive influence is why most of us feel these kinds of efforts are fruitful. ■
Disclosure: Dr. Hayes-Lattin reported no potential conflicts of interest.
1. American Cancer Society: Cancer Treatment & Survivorship Facts & Figures 2016-2017. Available at www.cancer.org/acs/groups/content/@research/documents/document/acspc-048074.pdf. Accessed November 28, 2016.
2. Bleyer A, O’Leary M, Ries LAG, et al: Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000. NIH pub no 06-5767. Bethesda, Maryland; National Cancer Institute; 2006.