More and more young people are surviving childhood cancer, yet the effects of having cancer and going through treatment often continue into adulthood. Research shows that people diagnosed with cancer during adolescence or young adulthood are less likely to go to college, live independently, form close relationships, or have a job later in life.
That could be because the experience of cancer affects a person’s mental and emotional development, including how they develop skills in coping, managing stress, setting goals, making decisions, and handling emotions.
“We believe that’s at least partly why cancer patients between the ages of 12 and 25 have a higher risk for anxiety, depression, and post-traumatic stress during and after cancer treatment,” said Abby Rosenberg, MD, MS, MA, director of palliative care and resilience research at Seattle Children’s Research Institute.
The effect of cancer on adolescents and young adults inspired Rosenberg to develop a coaching program to help young patients build skills that improve resilience. A grant from the American Cancer Society (ACS) helped fund that work.
Resilience is about getting and using the resources we need to keep our physical and emotional well-being as normal as possible, even when we face high levels of stress. “It’s a process that can be taught and learned,” Rosenberg said.
In the pilot test, the adolescents and young adults who completed PRISM reported better quality of life, less distress, and being better able to get a sense of meaning from their ordeal with cancer.
Her coaching program, PRISM (Promoting Resilience in Stress Management) uses language and teaching methods that are targeted to the age of the cancer patient.
The program involves 4 one-on-one sessions, for 30 to 50 minutes, usually every-other week. There’s also a facilitated family meeting where the patient can teach their family members about the things they learned from the PRISM sessions that helped them. Coaching sessions may occur during hospital stays, clinic visits, or at home through video conferencing.
In the pilot test, the adolescents and young adults who completed PRISM reported better quality of life, less distress, and being better able to get a sense of meaning from their ordeal with cancer. The results also found the patients had improved health and were 90% less likely to have signs of depression.
“After the trial, participants told me, ‘My mom needs this program. My dad needs this program,’” Rosenberg said. So she adapted the program for parents, calling it PRISM-P, and led a study to test it. Self-reports from the parents showed the program improved parents’ resilience and their ability to find some good in bad situations.
“Overwhelmingly, both patients and parents said what they learned from PRISM was important,” she said.
Adolescent and young adult participants with advanced cancer had other suggestions. “Patients told us PRISM helped them figure out what mattered to them and how to achieve their goals,” Rosenberg said.
After PRISM, the patients said they wanted even more support to help them understand how to use these new skills and ways of thinking to help them with their experience of having advanced cancer.
In response to the feedback and with support from ACS, Rosenberg added an advanced care planning exercise to the program, calling it PRISM-AC. She’s testing PRISM-AC in a clinical trial with young patients (ages 12 to 24).
In these coaching sessions, the participants tackle how they cope with topics that are common for people with advanced cancer, like fear of dying and end-of-life wishes. The goal of the study is to see if PRISM-AC helps ease distress among young patients with advanced cancer.
“My vision is that we integrate this type of scientifically backed psychosocial support for all patients with cancer, especially adolescents and young adults,” Rosenberg said. She believes these types of programs are pretty simple to put in place and can be very effective in easing the burdens of cancer.