Adaptation of an Evidence-Based Goals of Care Communication Intervention for Adolescent and Young Adult Cancer Patients
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PROJECT SUMMARY/ABSTRACT Adolescent and young adult cancer patients (AYAC) between 15-39 experience poor care outcomes at end of life (EOL). More than 50% receive at least one futile, aggressive care intervention (e.g., intubation) in the last 30 days of life, up to 65% die in acute care settings, and fewer than 30% enroll in hospice. The clinical practice of goals-of-care conversations (GOCC) between cancer patients and oncologists is known to promote high quality EOL care. However, less than 20% of AYAC have GOCC in the last 2 months of life. This deficit is driven by insufficient guidance for providers about how to tailor GOCC for developmental factors unique to AYAC, including identity formation, pursuit of new educational and vocational endeavors, and changing interpersonal relationships. For example, clinicians are often unsure how to balance the perspectives of family members and AYAC in GOCC and fear causing AYAC to lose hope about their future adulthood. In previous research, AYAC describe preferences for communication that addresses factors unique to their developmental stage, including effective integration of their voice with family members (e.g., parents), direct and honest discussions about EOL, and empathic, “normalizing” communication. However, these preferences are not consistently incorporated into best communication practices for AYAC. Given this information, there is an urgent need to tailor a GOCC intervention to support high quality GOCC for AYAC. The goal of this project is to adapt an GOCC intervention for AYAC. This K08 application will be the first to leverage adaptation of a low cost, low risk, evidence-based communication intervention to improve care quality for a specific patient population with poor EOL care outcomes using a multi-phase process model for adapting interventions. The findings from this project, along with the proposed mentored training goals of (1) adaptation of communication interventions in cancer control research, (2) EOL care needs specific to AYA cancer patients, (3) conducting randomized controlled trials in cancer control research, and (4) professional development, will prepare me to fully launch my independent program of research in my forthcoming faculty role. The proposed training plan builds on and extends my previous experience to support effective end-of-life communication between adults across the lifespan with specific communication needs and their clinicians. The findings from this pilot trial, along with the proposed career development plan and support from my mentors (Drs. Patricia Parker and Kelly McConnell) and scientific advisors (Drs. Rosario Costas Muniz, Andrew Epstein, Erin Kross, and Abby Rosenberg) will prepare me to submit an R01 application at the end of Year 4 of the award period to investigate the efficacy of an adapted GOCC intervention for AYAC in a fully-powered randomized trial.
