Study aims to improve long-term health outcomes for young cancer survivors

The Fred Hutchinson Cancer Research Center Survivorship Program and its directors, K. Scott Baker, M.D. and Karen Syrjala, Ph.D., have been selected to lead a nationwide study that aims to improve long-term health outcomes for cancer survivors between the ages of 18 and 39.

Under way this spring, the study will involve the Livestrong Survivorship Center of Excellence Network, a collaborative research group of seven National Cancer Institute-designated comprehensive cancer centers, including the Fred Hutchinson/University of Washington Cancer Consortium.

The Livestrong Foundation awarded the group $1.2 million for the initial study start-up to learn more about its young-adult cancer survivors with four goals in mind:

•Testing the impact of providing essential elements of survivorship care that include a treatment summary and a survivorship care plan that includes recommendations for ongoing health monitoring, strategies for improving health, and future cancer screenings
•Providing evidence to support long-term follow-up recommendations for these adult survivors
•Determining effective methods of communication for survivors in this age group
•Testing treatments that could improve survivors' health and well-being

"There's a compelling need for this work, as young adults fall into the gap between studies of childhood cancer patients and those in mid to late life, who more commonly have cancer," Baker said. "Young people with cancer are impacted at a very formative, critical time of life, and we must put more effort into learning how we can help them thrive in the years following treatment."

Young adults are historically difficult to enroll in research, according to Ruth Rechis, Ph.D., director of Evaluation and Research for the Livestrong Foundation, but the network of survivorship programs can help overcome the obstacles. "The power of the network is to gather information from across geographic and demographic lines, and then put that data to good use," she said. "We can zero in on what helps this population, understand which interventions are successful, and then implement them nationwide through the directors of our survivorship programs."

Collaborating sites include The Abramson Cancer Center at the University of Pennsylvania, Dana-Farber Cancer Institute, Jonsson Comprehensive Cancer Center at UCLA, Memorial Sloan-Kettering Cancer Center, University of Colorado Cancer Center and University of North Carolina Lineberger Comprehensive Cancer Center.

The study goal is to recruit a total of 3,000 former patients from across the network of cancer centers. The survivors in the study are a year or more out from cancer treatment, and they will be followed for at least three years.

Cancer is a leading cause of death among young people in the U.S., but outcomes and survival rates for this group have not improved despite decades of advancements in cancer prevention, early detection and treatment. Young-adult survivors typically cite challenges such as physical limitations, infertility, fear of cancer recurrence and discrimination in employment and work benefits.

Psychosocial impacts of cancer treatment are also a major concern for young adults, said Kelly Ambrose, Fred Hutch-based project manager for the study. "Young adults commonly worry about cancer affecting their ability to connect with other people," she said. "From maintaining social networks to dating, marriage and having kids, there are many big life decisions that impact this population."