Adolescents and young adults (AYAs) who have cancer typically fare worse than either pediatric patients or adult patients during and after cancer treatment. They also have inferior psychosocial outcomes, meaning they are more likely to have anxiety and depression, and are less likely to go to college, get married, have jobs or meet other societal milestones.
Pediatric oncologist and Treuman Katz Center for Pediatric Bioethics faculty member Dr. Abby Rosenberg is studying whether it is possible to combat these poor outcomes by teaching AYAs how to be resilient. She is piloting an intervention designed to promote resilience among adolescent and young adult patients with cancer.
Rosenberg began her professional life as a social worker in New York City in the mid 1990s, working with HIV-positive kids and parents. This sparked her interest in medical research. She then worked as a clinical research associate before going to medical school. A rotation in pediatric oncology confirmed her interest in helping children and their parents. “Cancer impacts everything. It affects the patient, the family and the community,” notes Rosenberg.
Over the past several years, Rosenberg has asked individual patients during the first year of their cancer experience how they define resilience, and has explored what makes them more (or less) resilient. Rosenberg is teaching skills that AYAs themselves identify as core components of resilience:
- Stress management
- Goal setting
- Positive reframing (turning a negative focus into a positive)
- Benefit finding (finding new meaning, purpose or benefit from difficult experiences)
Her research team is conducting a pilot study focused on teaching young cancer patients these “four pillars of resilience.”
AYA patients receive four one-on-one sessions over a six-week period, plus accompanying handouts for later reference. Rosenberg and her team hope that AYAs and their families will use what they’ve learned during cancer treatment and apply these skills to empower them in the future.
“Health is determined not only by biomedical processes, but also by patients’ and families’ emotions, behaviors and social relationships,” Rosenberg observes. “Our research focuses on understanding, supporting and even strengthening patient and family coping. We think doing so will ultimately improve their long-term physical, emotional and social well-being.”
This type of training aligns with recent recommendations from national organizations like the Institute of Medicine and the American Society of Clinical Oncology recognizing that there is more to wellness than biomedical treatments and that “whole patient care” should be standardized. In 2011, the Commission on Cancer, established by the American College of Surgeons, mandated screening for distress at all accredited cancer centers. It follows logically that the next step would be developing tools for the patient to deal with this distress.
Rosenberg’s research complements research conducted in other patient populations providing evidence that the four pillars of resilience are universal for patients with chronic disease. The training program is also being piloted for AYAs with diabetes, led by Seattle Children’s investigator Dr. Joyce Yi-Frazier. The two collaborators are identifying nuances that are needed to apply the intervention to different groups. For example, AYAs with diabetes might come to Seattle Children’s less frequently than those with cancer. For them the content of the program is the same, but changes may be needed in terms of where, when and how it is administered.
There are special challenges to working with AYAs – they are at an age when executive function (making decisions, deferring gratification, controlling impulses) is not yet fully developed. Rosenberg, though, has found AYAs to be receptive to this training, as well as to the broader concept of research to support their overall personal development. All the AYAs who have been in the pilot phase of the project have reported favorably. “We designed this to be concrete and doable for patients and families. What we’ve found is that they also think it is a helpful resource,” notes Rosenberg.
“‘Thriving’ demands whole-patient care from the beginning. We want to see these adolescents and young adults thrive during and after cancer treatment.”
- To teach AYAs coping techniques to help them increase their resilience – as defined by each AYA individual
- A randomized-controlled trial to test the program over two years in AYAs with cancer
- Joyce Yi-Frazier, PhD, Seattle Children's
- K. Scott Baker, MD, MS, Seattle Children’s
- Karen Syrjala, PhD, Fred Hutchison Cancer Research Center
- Joanne Wolfe, MD, MPH, Boston Children’s