Novel approaches to help young adult survivors
With more than 80,000 young adults diagnosed with cancer in the U.S. each year and an increasingly expanding recovery rate, young adult cancer survivors are a burgeoning group with specific needs unlike those of children or adults.
To assist cancer survivors between the ages of 18–39, Rina Fox, PhD, MPH, University of Arizona Cancer Center member and assistant professor in College of Nursing, has spent several years developing an innovative, 10-week eHealth information and peer support stress management program called TOGETHER-YA (Young Adults).
Dr. Fox and her group of investigators are connecting young adult cancer survivors with tools that include relaxation training, cognitive-behavioral therapy and health education. This work falls in line with her focus at the Cancer Center as part of its Cancer Prevention and Control program.
“I care very deeply about this work,” Fox said. “In the world of psychosocial oncology, this population [adolescents and young adults] has really gained attention in a much more significant way in the past couple of years. I think it’s important because it's a group that historically has fallen through the cracks.”
Dr. Fox recently received a $125,000, one-year grant from the Institute for Mental Health Research to expand the program by recruiting young adult cancer survivors nationwide and to further explore the potential effects of the TOGETHER-YA intervention on young adult cancer survivors’ mental health.
Her team includes Emmanuel Katsanis, MD, professor of Pediatrics, Medicine, Pathology, and Immunobiology in the College of Medicine, Shravan Aras, PhD, assistant director, Sensor Analysis and Smart Health Platforms; Laura B. Oswald, PhD, an assistant professor in the Department of Health Outcomes and Behavior at Moffitt Cancer Center; and Terry Badger, PhD, RN, PMHCNS-BC, FAPOS, FAAN, the Eleanor Bauwens Endowed Chair and Professor and chair of the Community and Systems Health Science Division in the College of Nursing. Doctors Katsanis and Badger are also University of Arizona Cancer Center members specializing in translational science and prevention/control, respectively.
The team will examine indicators of physiological stress captured using finger-worn sensors in their study, titled “Improving Young Adult Cancer Survivors Mental Health with an eHealth Group Intervention.”
The grant expands the team’s earlier project, “Adapting and Testing an eHealth Platform to Deliver a Group Intervention for Young Adult Cancer Survivors,” made possible by a $30,000 American Cancer Society Institutional Research Grant (ACS-IRG) through the University of Arizona Cancer Center.
“This was an investment in translational potential and innovation to help young persons who’ve faced a traumatic experience,” said Cancer Center Director Joann Sweasy, PhD. “Dr. Fox and team have taken full advantage of the opportunity, and we’re excited to see her receive additional support for this important work.”
“Young adulthood is a time of rapid and tumultuous socio-developmental growth,” Dr. Fox said. “In the U.S., it’s the time when people are supposed to be starting their adult lives. It's a time of profound development that happens very quickly, and cancer can come in and can arrest that development.”
She said that for many young adult cancer survivors, there's also a major transition when they finish active treatment and move into longer term survivorship.
“That's a time when psychosocial challenges often emerge as well,” she said. “There can be real challenges with quality of life, real challenges with mental health, and real challenges with unmet needs for information and support.”
Expanding the original study
Dr. Fox is a licensed clinical psychologist, and she first began working with young adult cancer survivors when completing a postdoctoral fellowship at Northwestern University Feinberg School of Medicine.
Dr. Fox and Dr. Oswald, who was also completing a postdoctoral fellowship at the time, co-led a drop-in support group with for young adult cancer survivors receiving care at the Robert H. Lurie Comprehensive Cancer Center at Northwestern University. This experience inspired their collaborative research with this population.
“We were able to get a better understanding of some of the challenges this population faces through that clinical experience,” Fox said. “It was a great example of our research endeavors really stemming from what we observed in our clinical practice.”
In the first phase of their TOGETHER-YA project, they developed a manual from existing stress management interventions and used feedback from focus groups with young adult cancer survivors themselves to customize the intervention.
“Getting feedback from the people who we are trying to reach is invaluable, because that is how we are able to develop something that is effective,” she said. “We cannot do this work without the insight and generous input of these young adult survivors.”
Dr. Fox said that feedback from focus group participants indicated that the language needed to be more sensitive to this population.
“One example is assertive communication,” Fox said. “We got feedback that that term assertive just did not work for young adults—the ones who participated in our study really didn't feel like that spoke to them in a way that was productive. Instead of using the term assertive, we now use the term effective communication.”
In the second half of the study, young adult cancer survivors participated in a pilot trial of TOGETHER-YA through intervention groups led by a trained facilitator over videoconference. They found that the intervention was both feasible and highly acceptable to young adult cancer survivors.
The researchers published their results in a publication titled, “Development and Initial Testing of TOGETHER-YA: An eHealth-Delivered and Group-Based Psychosocial Intervention for Young Adult Cancer Survivors.”
Using their subsequent ACS-IRG funding through the University of Arizona Cancer Center, the team explored an eHealth model to create a convenient method for young adults to connect with the peer support groups.
“We took all that content and we put it online, which has been very helpful,” Dr. Fox said. “Through usability testing, we received a lot of incredible feedback about ways to improve the presentation of the material online, and we improved the functionality of the website.”
She said that one area they are working to improve is shortening the program from 10 weeks of two-hour sessions to better fit the lives of busy young adults.
“The next step for us is to figure out ways that we can optimize and streamline this intervention to make sure that we deliver the pieces that are most impactful and minimize the burden from things that are not as helpful as the rest,” she said.