How Nurses Can Improve AYA Survivorship Care

Finishing cancer treatment is often seen as a triumphant event, with some oncology clinics having celebratory parties or bells to ring. However, for many adolescent and young adult (AYA) survivors, disease-related hardships are far from over.

AYA survivors often face late effects from their treatment, as well as psychosocial issues. And, now that they’re not being seen as often by their care teams, they run the risk of being lost to follow up. Nurses can be instrumental in making sure that this group does not fall through the cracks.

“I do think nurses are in a prime position,” said Amy J. Walker, PhD, RN, an associate professor at the University of Washington, Child, Family and Population Health Nursing, in an interview with Oncology Nursing News. Walker and colleagues recently led research to better identify the challenges that AYA survivors face after treatment ends.

Despite the risk for relapse or secondary cancers and long-term health issues as a result of aggressive cancer treatment, Walker explained that less than 50% of AYA survivors participate in long-term follow-up care.

“Decades after treatment, they will have late effects, and because they’re adolescents during treatment, when something happens 20 or 30 years later, it doesn’t answer their minds that cancer could be the reason,” Walker said. “Because they don’t follow up, we aren’t able to identify these late effects and problems as they occur. So long-term follow-up is a big deal.”

In addition to the physical challenges, their disease history can have major implications for their psychosocial health, as well. In their study, Walker and her team identified some of these issues, including getting back to school; relationships with parents, siblings, and friends; feeling changed by the experience; and concerns about relapse.

These issues can be compounded by the transitional period that these patients may be in when they face their cancer diagnosis. Usually, they are establishing themselves and gaining independence from their parents. Then, after being diagnosed, many AYA patients go back to heavily relying on their family. Not to mention, Walker noted that this group tends to hit developmental milestones — such as moving out and getting married/finding a life partner – later than their healthier peers.

At the end of treatment, oncology nurses should begin — and then continue – conversations about these topics with their patients, emphasizing the importance of follow-up care and personal health planning.

However, Walker also mentioned that these conversations must be handled delicately.

“I think at the end of treatment, there's this celebratory feeling, and because the treatment is so rough, that there's a tendency to not want to say, 'And now you're really at risk for all of these things.' It kind of dampens their hope,” Walker said. “I think that's what a lot of people are thinking, so people don't tend to talk about it very much. We need to make a lot of improvements in terms of anticipatory guidance for survivors and parents about the period.”

In order to improve these conversations, nurses should let AYA survivors know the following, according to Walker:

• Life may not change as much as survivors expect it to at the end of treatment
• Survivors will encounter some really strong emotions — some that they didn’t even know they had
• Friends and family members may expect survivors to move on and “get over it” faster than they are ready to
• Support is available for this population

“I would love to see parents and survivors work with psychologists to help them deal with what has happened to them, and their future. I think we need to definitely develop transition programs so that we don't just dump them at the end,” Walker said.

Read more: A Nurse’s Take on Being There for Young Adults With Cancer