The AYA Oncology Nurse Navigator Role: What It Is and Why It Matters

From clinical trials, to psychosocial needs, to care transitioning, adolescent and young adult patients with cancer face unique challenges that set them apart from the general adult and pediatric patient populations; AYA nurse navigator Danielle Blair, RN, BSN, OCN, CCRP, aims to meet these unique needs at every step of patient care.

Blair’s role is part of the adolescent and young adult cancer programs at Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center as part of the Children's Cancer Institute/John Theurer Cancer Center in Hackensack, New Jersey.

Blair explained that her work caters to the needs of the AYA patient population in oncology, providing patients with networks to connect with peers who have gone through or are going through similar experiences, which Blair emphasized are often separate from traditional support groups. While support groups are a fit for some, Blair finds that patients in this age range may not need somewhere to talk about their diagnosis—rather, they need somewhere to focus on other things with individuals who understand what they are experiencing.

Further, Blair aims to pair patients with resources that they connect with, along with providing education and coordination for clinical trials. Blair explained that as a former clinical trials nurse, she is able to harness her knowledge to connect AYA patients, a patient population typically underrepresented in clinical trials, with opportunities in pediatric and adult clinical trials.

What does your role as an AYA oncology nurse navigator entail?

My key roles are to help supplement our clinical team’s care. I’m here to help in whatever way an individual AYA patient may need. Sometimes that might look like helping to schedule their appointments, helping to get them referrals to outside physicians or resource referrals, and resource navigation for them to find support organizations that can enhance their care, so it can look different based on what the patient’s individual needs are. I am a supplement to the care team, so I add an extra layer for patients.

A lot of institutions don’t have a role like mine, so my role is very unique to our institution and across the country. There are only a few centers that have partnered with different organizations to harness and focus their care specifically on AYAs. Each group that’s done that has done it in a different way. Nurse navigators don’t always look the same across different institutions, so my role looks very unique, and it’s tailored to our institution itself.

What are some offerings of your institution’s AYA cancer program that are unique to this patient population’s needs?

I help to develop the program, and some of the things that we’re trying to do is provide AYA-focused tools that patients can use, both in their own ability to find resources, see what speaks to them, and find what they will engage in, as well as to help them identify what their needs are.

One of the things with adolescents and young adults is they don’t know what they need or what they can ask for. Having a tool that allows them to identify those needs is very important, too. Aside from that…the social aspect of cancer can be very challenging. It can be very isolating. …Family and friends can be very supportive, but even when they mean well, things don’t always come out well. Support is not always looked at in the same way when it comes from people who just don’t understand the process or what they’re going through. So having support of people that know what they’ve had, what they’re going through, what they are experiencing now, or what somebody else has experienced in the past, can really be very beneficial to our AYA patients.

How does your program address the psychosocial needs of AYA patients with cancer?

We’re trying to create educational pieces and tools, different social opportunities, both on site and off site, so that we can allow our patients to build a community here that’s not necessarily that true “support group,” because a lot of times, that’s not really what they want. They don’t want to have that support group where they talk about what’s going on with their healing. They might just want to be around people who understand [the idea that] “I don’t want to talk about it right now, and that that’s okay.”

Does your program connect patients to clinical trials?

Prior to this role, I was a clinical trials nurse, so part of my role [is related to that experience], too. This population is underrepresented in clinical trials, so I am trying to utilize my connections with the clinical trials teams in the adult setting as well as the pediatric setting to see how we can enhance our programs to offer as much opportunity in clinical trials to [AYA] patients as possible, and to help [AYA patients] understand the value of clinical trials. I look to facilitate communication and enhance our portfolios to know that we can really cover that age range.

In what areas do AYA patients need most support when transitioning to adult care?

The transition from pediatric care to adult care can be challenging. Some of our patients may never have to transition their cancer care between pediatric and adult, but they do have a slew of other care that needs to be transferred. They may have cardiologists or other specialists they have to follow up with. They may have to find new primaries because they just didn’t have a primary before, or they were under the care of a pediatrician. Finding what that adult care scenario looks like and helping facilitate that for patients is also part of this role. For the patients who have to continue their cancer care between the pediatric setting and the adult setting, this role includes helping to bridge that gap between the 2 centers and make a smooth transition.

This transcript has been edited for clarity and conciseness.