A cancer diagnosis is difficult at any age, but for adolescents and young adults, the experience might have long-lasting social implications.
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These individuals have lower social functioning than their healthy peers, a new study finds. And the disruption to social life lasts beyond cancer treatment if the patient perceives receiving little support.
Bradley Zebrack, Ph.D., a professor and researcher at the University of Michigan School of Social Work and Rogel Cancer Center, chose to study the effects of cancer on young people after his own experience with the disease at 25.
Rather than focusing on his job and girlfriend of nine months, a Hodgkin lymphoma diagnosis forced him to stop working and move back in with his family. He recalls having to miss a July Fourth celebration because he felt too sick.
"That was the first time I realized, wow, this experience is really isolating," Zebrack says. "Years later, when I became an academic and made young people the focus of my research, I found it was a common experience. And a lot of young people continue to have the experience as they got older."
The study, which was published in the journal Cancer, defines social functioning as "those activities considered essential for performance of the several roles which each individual by virtue of his membership in social groups is called to carry out."
Researchers surveyed 215 adolescents and young adults (ages 14 to 39) with cancer. A total of 141 patients completed a self-reported measure of social functioning within the first four months of diagnosis and again 12 and 24 months later. For example, did students typically attend class, interact with peers, attend social gatherings and form attitudes and opinions that would shape their future lives?
The results indicate a cancer diagnosis can limit the social life of a young person, with social functioning still disrupted two years after diagnosis. Patients struggle to return to work or school, feel isolated and experience increased risk of depression and anxiety.
Improving young lives now
Zebrack says there is potential to help young people with cancer during this crucial time in physical and social development. A growing body of research shows a positive impact of age-specific programs designed to help young people reintegrate into their lives after cancer.
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The U-M Rogel Cancer Center is one of many centers across the United States with cancer programs designed for young adults. The Sarcoma Survivorship Program was established by Laurence Baker, D.O., to address the long-term health care needs of sarcoma cancer survivors no longer in active treatment. The clinic is open to sarcoma survivors 18 years and older and to patients transitioning from pediatric to adult medical care.
Other programs in the young adult space can help as well. Outdoor adventure cancer therapy programs such as First Descents offer trips involving kayaking, rock climbing and surfing to help survivors reintegrate.
"Emerging programs that are specific to the adolescent and young adult experience are really important," Zebrack says. "For example, the Stupid Cancer website for young adults. They have a program called Instapeer where you can get instantly matched up with someone with cancer like you."
Zebrack's past research on young adults with cancer suggests that participation in age-specific programs can improve symptoms of depression and maintain positive results for at least one month afterward. He has also studied the improvements in patient outcomes and reductions in cost when a focus is placed on psychosocial care in addition to medical treatment.
"I'm all for research and investigating the potential cures for cancers," he says. "But the ability to impact and improve the lives of people going through cancer right now should also be a focus of research so we can see the payback of our investment in improving young lives."