Teens and young adults with cancer need special support, City of Hope finds
November 17, 2015 | by Travis Marshall
For adolescents and young adults who are navigating a tumultuous stage of life, a cancer diagnosis can be particularly devastating. Already challenged by changes such as college, a first job or a first heartbreak, young people experience greater levels of distress during cancer treatment than older patients in similar situations, research has shown.
Very little research has been done to either understand or address the psychosocial needs of these younger cancer patients – until now. For several years Jeanelle Folbrecht, M.D., chief of psychology at City of Hope, has spearheaded an experimental program to find ways to reduce distress among adolescents and young adults (also referred to as AYAs) dealing with cancer.
“For so long, AYAs have just been lumped together with either pediatrics or adults,” said Folbrecht, who heads City of Hope’s AYA Task Force. The multidisciplinary team is working to find ways to reduce distress among AYAs in treatment.
“They rarely encounter other patients their age at treatment (and) that can make them feel isolated, like they’re the only ones,” she said.
That’s where peer groups come in. Being with others who understand what they’re going through can help young cancer patients cope, Folbrecht and her team have found.
“These are people who are thinking about their first romantic relationships, going to college, starting careers – and cancer totally interrupts those efforts,” Folbrecht said. “On top of that, their friends may not understand how to offer support, so they may lose their social groups, resulting in greater dependence on their parents right when they’re trying to become more independent.”
What about the young people?
Folbrecht’s idea for the program started in 2011 when she received a grant from the Livestrong Foundation, a nonprofit organization that provides support to people living with cancer. She and the team modified an existing cancer survivor program into a six-week module specifically for AYA patients, called Cancer Transitions: Moving Beyond Treatment.
“We ran that program twice,” Folbrecht said. “It had a large exercise component, but we found that our participants really enjoyed the group settings, and many said they would have loved attending a similar group during their treatments.”
This led to the creation of new programs specifically designed for adolescents and young adults to attend while still undergoing treatment. Each segment lasts six weeks, with weekly two-hour meetings.
“We spend the first 45-minutes or so doing an educational seminar, followed by peer group discussions,” Folbrecht said. “We didn’t want these to just be support groups – AYAs don’t really want that.”
Topics include how to manage symptoms, skills for coping with the effects of the disease, self-image, personal and romantic relationships, fertility and communication.
Facilitators approach the topics from a young person’s perspective. For example, relationships and fertility can be particularly emotional topics for young people, who may be just starting to have sex or considering whether they want to have children.
“We have a nurse who comes in to talk with them about how to have safe sex while they have cancer, and to talk about their options if they’re facing a loss of fertility from their treatments,” Folbrecht said.
Before and after each six-week program, Folbrecht and her team collect Hospital Anxiety and Depression Scale, or HADS, numbers from the patients. Initial results have been positive, showing a drop in distress of about 15 percent among attendees. However, with such a small sample size, it’s not yet enough to be conclusive.
In reality, this type of research is still in its infancy, despite the fact that cancer is the No. 1 disease-related cause of death for AYAs in the U.S. Folbrecht’s program is one of the first to address the psychosocial needs of adolescent and young adult cancer patients within a group setting.
So far, the AYA Task Force has conducted four six-week programs between 2013 and 2015. The next program is tentatively scheduled for the spring of 2016.
“It seems promising – people are really engaged,” Folbrecht said. “We had some patients showing up with their nurses and oxygen tanks. It wasn’t easy for them to come, but they wanted to be there.”
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