Developing Patient-Centered Interventions To Improve Outcomes
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, hold a job or meet other societal milestones.
Pediatric oncologist and bioethics faculty Abby Rosenberg, along with her team at the Palliative Care and Bioethics Research Lab including bioethics staff Krysta Barton, is studying whether it is possible to improve these poor outcomes by teaching patients how to be resilient. Over the past several years, Rosenberg followed a stepwise process to develop and test a novel intervention.
First, she asked patients and parents to share how they defined their own resilience during and after their experiences with cancer. Both groups identified the same core idea: that resilience was about harnessing key resources in order to withstand adversity.
Specifically, the AYAs identified 4 important skills:
- Stress management
- Goal setting
- Positive reframing (turning a negative focus into a realistic, if not positive, one)
- Benefit finding (finding new meaning, purpose, benefit or gratitude from difficult experiences)
Second, based on these reflections, Rosenberg and her team developed a new curriculum called Promoting Resilience in Stress Management (PRISM) to teach these skills to AYAs. She guessed that many AYAs would not yet have had life experiences to learn these skills on their own. For those who had, PRISM could help strengthen the skills.
Rosenberg refined the PRISM program with 24 AYAs with either cancer or diabetes, incorporating their feedback in order to make it user-friendly and helpful. All the participants said the program was helpful.
Finally, Rosenberg conducted a randomized controlled trial to see if PRISM changed outcomes for the AYA patients. Among 92 AYAs with cancer, PRISM was associated with improved resilience, hope, quality of life and decreased psychological distress.
Importantly, the PRISM training was easy to conduct and aligns with recommendations from national organizations to standardize an approach called whole patient care. Findings suggest a pathway to integrating resilience training for more patients than just those with cancer.
Based on the success of the PRISM trials, Rosenberg and her team are now expanding their initiative. Parents of prior participants asked for their own version, so Rosenberg developed a parent-focused version that is now being tested in another randomized trial.
Early findings suggest parents find it highly valuable and helpful in taking care of their children. Other ongoing early studies are confirming PRISM can be done with AYAs who have cystic fibrosis or chronic renal failure, and a future multisite trial will test PRISM among AYAs receiving hematopoietic cell transplant for leukemia.
“Health is determined not only by biomedical processes, but also by patients' and families' emotions, behaviors and social relationships. Thriving demands whole-patient care from the beginning. We want to see these adolescents and young adults thrive during and after cancer treatment. 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.”
To develop systematic programs that will improve the quality of life and well-being of children and AYAs with serious illness and their families.
- NIH/NCATS KL2T2000421
- National Palliative Care Research Center
- American Cancer Society
- NIH NCI BIQSFP AGCT1531
- Rosenberg AR, Yi-Frazier JP, Wharton C, Gordon K, Jones B. Contributors and inhibitors of resilience among adolescents and young adults with cancer. Journal of Adolescent and Young Adult Oncology. 2014;3(4):185-1934.
- Rosenberg AR, Yi-Frazier JP, Eaton L, Wharton C, Cochrane K, Pihoker C, Baker KS, McCauley E. Promoting resilience in stress management (PRISM) – A pilot study of a novel resilience-promoting intervention for adolescents and young adults with serious illness. Journal of Pediatric Psychology. 2015 Oct;40(9):992-999.
- Rosenberg AR, Orellana L, Kang T, Geyer JR, Feudtner C, Dussel V, Wolfe J. Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer. Journal of Clinical Oncology. 2014 Sep 20;32(27):3005-3011.
- Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C. Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review. JAMA Pediatrics. 2016 Dec;170(12):1216-1223.
- Rosenberg AR, Bradford M, Howard W, McCauley E, Curtis JR, Wolfe J, Baker KS, Yi-Frazier J. Promoting resilience in adolescents and young adults with cancer: A randomized clinical trial. 2018. In press.