Managing Editor, OncLive®
Kristi Rosa joined MJH Life Sciences in 2016 and has since held several positions within the company. She helped launch the rapidly growing infectious disease news resource Contagion, strengthened the Rare Disease Report, of HCPLive, and now serves as the main digital news writer for OncLive. Prior to working at the company, she served as lead copywriter and marketing coordinator at The Strand Theater. Email: firstname.lastname@example.org
R. Lor Randall, MD, FACS, highlights the specific challenges faced by adolescent and young adult patients with sarcomas, the importance of promoting awareness of this issue, and the resources available to improve outcomes in this population.
R. Lor Randall, MD, FACS
Adolescent and young adult (AYA) patients with cancer, particularly sarcomas, face unique challenges with obtaining adequate care and as such, they tend to have poorer outcomes, according to R. Lor Randall, MD, FACS. To address the unmet needs in this underserved population, several programs have launched in recent years.
Although defined by several demographic criteria, AYA patients are defined as those who are between the ages of 15 and 39 years old.
“If you look at the oncology world from a healthcare delivery standpoint, there's a bimodal distribution of resources and attention [that are focused] on children and adults in the age group of 40 and beyond.”
As pediatric oncologists specialize in treating children diagnosed with what are referred to as childhood cancers—including osteosarcoma and Ewing sarcoma—and medical oncologists are most familiar with cancers that typically affect older patient populations, there is a clear gap in care for AYA patients, who fall within the middle of the spectrum.
These patients can still develop childhood cancers but are old enough where they are unable to be treated by a pediatric oncologist, stressed Randall. Because medical oncologists are not as familiar with childhood cancers as those who specialize in pediatric cancers, they may not be adequately equipped to optimally treat AYA patients without assistance.
“[Medical oncologists should know] that there are resources out there to complement their practice, and through search engines one could find many AYA programs that are geographically close by,” said Randall. “[These programs] may be able to counsel patients and steer them in ways that will only complement the medical oncologist's delivery of care.”
In an interview with OncLive®, Randall, the David Lynn Endowed Chair for Orthopaedic Surgery and the professor and chair of the Department of Orthopaedic Surgery at the University of California, Davis Comprehensive Cancer Center, highlighted the specific challenges faced by AYA patients with cancer, the importance of promoting awareness of this issue, and the resources available to improve outcomes in this population.
OncLive: Could you discuss the unique challenges faced by AYA patients with cancer?
Randall: AYA patients are defined by a variety of demographic criteria, but the consensus has been that we're talking about an age group defined as 15 to 39 years of age. Basically, that means that [this population is composed of] patients who are biologically of reproductive age all the way through the age of what we might call senescence.
If you were to survey medical oncologists, most of them would say that their patients are over 40 years of age and are afflicted with, from a solid tumor standpoint, either cancers of the breast, prostate, lung, kidney, thyroid, and [maybe] a few others. Again, they’re all older [patients]. Or, [pediatric oncologists see] children with cancers and they have a support network [with] at least 1 parent who is wedded to helping them through their disease situation. When you get into the AYA domain, you see a shift—not only in the types of diseases, but also in the social networks of these patients.
[For example], create a vignette in your mind of a 19-year-old female who is legally an adult. She’s still in college, she may have a young child, and she has come down with cancer. [This patient has] a whole set of questions and social circumstances that [greatly differ] from that of a 42-year-old patient. [An older adult] is established in his or her life; they hopefully have some kind of socioeconomic framework that provides them with some support, and [they are typically] being treated for conditions that [many investigators are] focusing their [efforts] on. All of those things that I just spoke of are not really available to AYA patients because they fall between the bimodal distribution of the diseases and the socioeconomic framework to support them.
What are the most common malignancies that AYA patients tend to face?
Many of what we call “the childhood cancers” [can affect patients] up into [those in their] late 20s. Some patients might develop childhood sarcomas—osteosarcoma or Ewing sarcoma, for example—when they are no longer [considered to be] children.
If a 25-year-old patient has osteosarcoma, they can't get in to see a pediatric oncologist who knows how to treat it. They end up going to see a medical oncologist who has never seen [this kind of disease in this young of patient] and talks to them obtusely about the treatments for it. A medical oncologist may not be equipped to answer all of the questions that this 25-year-old has about [their diagnosis], such as what it means for their fertility because they're not usually dealing with fertility questions in, say, a 56-year-old with breast cancer.
If the medical oncologist is unable to answer these questions, can these patients be referred elsewhere?
They should be referring them, but who do they refer them to? Sometimes pediatric oncologists cannot take care of someone who is 25 years old because their hospital only sees patients up to age 18.
A consensus document from the National Cancer Institute (NCI) came out years ago; it said that AYA patients with cancer are an underserved demographic in oncology because the resources and the expertise to take care of them [are just not there]. These patients can't get in to see pediatric oncologists and, [even if they could], they have a unique set of issues that even pediatric oncologists may not be able to address. Such issues could include the fact that they’re living on their own, they don't have parents who are looking out for them, that their treatment is going to take 1 year, etc.
[These patients] face many unique social challenges, and the data show us that many of them do worse from a survivorship standpoint because they don't have [the necessary] resources available to them. It doesn't really hit the radar because so much of our cancer focus is on either the older or younger spectrums of life. Although this is a relatively small population, they're underserved.
What efforts are being made to address this unmet need?
The Children’s Oncology Group actually has an Adolescent and Young Adult Oncology Responsible Investigator Network that [is working to] open enrollment for clinical trials in patients all the way up to age 40. At the national level, they are trying to get patients enrolled on children's studies. In order to do that, they have to reach out and work with medical oncologists, so that they know to open these studies at their own institutions.
How did you become so involved in this research? How did these programs come to fruition?
The reason I'm aware of this issue is because, as an orthopedic oncologist, we take care of [patients with] sarcomas. If you look at the demographics for sarcoma, just over 50% of patients who have [this disease] fall into the age range of 15 to 39 years. We have some [patients who] are under the age of 15, and we also get some who are older than 40 years. However, [it’s important to note that] just over half [of the patients we see] fall into this demographic.
As an orthopedic oncologist, when I was starting out my practice, I struggled with how to get some of these patients' questions answered. I would reach out to a variety of different services [to help them]. I would reach out to pediatric oncology, fertility clinics, medical oncology, and even social workers, and I would try to synthesize the information [I collected].
In the early 2000s, several of us—orthopedic oncologists as well as pediatric oncologists—were struggling with some of these same issues outside of our normal area of expertise. These programs started to germinate. Now, in terms of steering people to resources, they need to look to their services at their own facilities to find out where the closest AYA programs are.
How might medical oncologists play a bigger role in helping these patients?
If [they see a patient who falls] in this age demographic with a tumor—and is not one of the ones that are usually seen in patients over the age of 40—they should reach out to their pediatric oncology colleagues to see if they have any information about any AYA oncology programs.
Most of the National Cancer Institute-designated Cancer Centers have some kind of AYA oncology cancer care program in their institution, and all of those AYA programs are in varying stages of development. [In some of these programs], specialists can actually see the patient, do a workup, etc. Others [provide] more of an advocacy role, where a navigator [is available to] help patients work between service lines to get all of their questions answered.
What specific research efforts are being made that you would like to highlight?
There are specific areas of interest. [For example], synovial sarcoma is almost the prototypical AYA tumor, in that it [mostly presents] in young adults. As such, there is a lot of research in this disease. In addition to the research of the molecular pathophysiology of synovial sarcoma, [work is being done to examine] demographics and how these patients are resourced for their care because they are AYA patients.
Having said that, the AYA programs themselves do a lot of investigation from a population-science standpoint. [They examine] how these patients get lost in the system and how they're unable to navigate to the appropriate centers to get all of their questions answered.
Where should future efforts be focused to improve the quality of care for these patients?
It is great that we're talking about this on this forum, because it raises awareness and that's “job number one.” We need to ensure that people understand that this is an unseen problem in oncology. Because people are not looking for it, they are not seeing it, but it is right there in front of us.
Second, we need to champion AYA programs and realize that these programs are not there to take patients away, if you will, from the medical oncology community. Rather, they are meant to add value to the care of the patient, so that the medical oncologist can still treat the patient for their cancer [and be] informed of all of these other aspects of their care.
Third, is again, would be to facilitate additional research; this is mostly done at the local level, but [we need to move] it to the federal level to examine how we can better understand how these patients' outcomes are affected—simply by the fact that they're between 15 and 39 years old.