Adolescent and young adults (AYAs; aged 15-39 years) with cancer are not uncommon in the United States, but their needs—be they physical, psychosocial, or financial—are unique, according to Paula Sanborn, MS, APRN, FNP-C, CPHON, ONN-CG, a sarcoma nurse practitioner, and Amanda Ramsey, MSW, LISW-S, CCM, an oncology social worker, both from Nationwide Children’s Hospital in Columbus, OH.
As they discussed at the AONN+ Virtual Midyear Conference, these patients are living longer and longer with their diagnoses, but the acute and long-term impacts of cancer and its treatment can be particularly impactful for AYAs. However, navigators can help to mitigate those impacts and help younger people with cancer hit the important milestones they hope to experience alongside their peers.
Prevalence of AYA Cancer in the United States
In 2020, the United States saw approximately 89,500 new cancer cases and over 9000 cancer deaths among AYAs. “This is the most common cause of disease-related death in high-income countries in this age-group,” said Ms Sanborn. “And it really presents a unique distribution of diseases compared with children and older adults who have cancer.”
In 2005 and 2006, the National Institutes of Health and the Livestrong Foundation partnered to conduct a progress review group to address the cancer care of patients aged 15 to 39 years, as well as what’s known as the “AYA Gap.”
The AYA Gap is clearly seen in data from the Surveillance, Epidemiology, and End Results (SEER) Program. Looking at the relative change in 5-year survival among patients with cancer from infancy to age 75, patients who fell into the AYA group had worse outcomes. According to Ms Sanborn, this is particularly concerning, because based on estimates of new cancer cases in 2021, 4.6% of all new cases will occur among individuals in this age-group.
The leading sites of new cancer cases in AYAs do vary according to age (15-19, 20-29, and 30-39 years), but cancers of the thyroid are prevalent in all age groups. Other common malignancies include melanomas and breast cancers in the 20- to 39-year age-group, and Hodgkin and non-Hodgkin lymphomas as well as bone tumors among younger patients aged 15 to 19 years.
According to SEER data from 2011 to 2017, AYAs had a 5-year survival rate of 85%. “But I think what we’re all seeing is that there are more treatment options, and patients are living longer,” she said.
Unique Needs of the AYA Patient
Unfortunately, delays in diagnosis are quite common among AYA patients with cancer. Fertility preservation is a crucial topic that should be addressed early with all AYA patients, as well as the issue of genetic predisposition and choice of treatment site or specialist.
“For example, for young adult patients who have Ewing sarcoma, evidence shows that they actually have better outcomes if they’re treated on pediatric protocols,” she noted. “The same goes for acute lymphoblastic leukemia and lymphoma.”
AYAs also have low rates of clinical trial participation, and they tend to struggle with treatment adherence more than patients with cancer in other age groups, she added.
Psychosocial Needs of the AYA
“While 15 to 39 might seem like a large age range, if you break it down into any point of that age gap, it’s a pivotal time in the patient’s life,” said Ms Ramsey.
She went on to explain that these patients might be trying to graduate from high school and decide whether they’ll pursue college or join the workforce, or they might be in college with their sights set on graduation and establishing themselves in a career after school. They might fall into a time frame when most of their friends and peers are getting married or starting a family, and a cancer diagnosis completely derails that for them. Or perhaps a little later in life, they’re learning how to parent children, maintain finances, and nurture relationships with family and a significant other, all while going through a cancer diagnosis and treatment.
“This is a time when young adults are looking forward to their independence and establishing their own life and trajectory. They may completely lose that and have to move back in with parents or rely on family when they had anticipated gaining independence,” she said. “On top of all of this are the physical changes they go through that may affect their self-esteem and body image.”
Resources and Support for AYAs
Nationwide Children’s Hospital has collaborated with the James Cancer Center at Ohio State Medical Center to establish a multidisciplinary AYA program. Their multidisciplinary team works to identify the specific needs of this population and offers education and programming opportunities in which patients can participate.
At Nationwide Children’s Hospital, upon a diagnosis of cancer in an AYA patient, an AYA coordinator is consulted, and a meeting is scheduled with the patient within 30 days of diagnosis. They introduce the program to the patient and offer a large folder of resources aimed at alleviating some barriers to care commonly faced by the AYA population. They focus on connecting patients with other people who may have had similar experiences and providing reliable education sources regarding their diagnosis. The AYA coordinator also begins assessments to identify the specific needs of the patient.
“As a social worker, I meet with the patient upon diagnosis and introduce my role. I then start a full psychosocial assessment to identify some of those immediate barriers or concerns,” she said. “As we know, there’s a lot of misinformation out there, so we really strive to direct our patients to reliable information as they learn about their new diagnosis.”
According to Ms Ramsey, the legal and financial portion is typically the first concern addressed by the AYA coordinator. “It’s normally the first thing on people’s minds, especially in regard to their insurance or finances,” she said, noting that the gap between no longer being carried by their parents’ insurance and having an established career that offers them their own insurance can be particularly challenging.
If patients have to dial back their hours at work or stop working altogether due to their diagnosis, they are likely concerned about losing their insurance. If they are living on their own, they are preoccupied with whether they will be able to maintain their housing costs on their own, or if they will have to move in with friends or family. And often, patients simply need help understanding what their insurance offers and what their out-of-pocket costs are going to look like as they go through treatment, she noted.
“These patients are concerned about losing their jobs because of the amount of time they’re going to have to miss due to treatment,” she said. “So upon diagnosis, we assess their insurance and financial concerns, and we screen to see if there is any need to apply for Medicaid or Social Security. If so, we get those started as soon as possible, because we all know that those are not necessarily quick resources to access.”
At diagnosis, all AYA patients at Nationwide Children’s Hospital also meet with an oncofertility team to assess the potential impacts of diagnosis and treatment on fertility, and patients are informed of the fertility preservation resources available to them.
Other common and crucial concerns to AYA patients include arranging reliable transportation to and from treatment, keeping the utilities on, and keeping food on the table. According to Ms Ramsey, identifying and mitigating these—and any other barriers to treatment—is the ultimate goal of care for these patients.
