Oncologists Endorse Divergent ‘Best Practices’ for Disclosing Prognosis in Advanced Pediatric Cancer (RP124)

Outcomes 1. Describe (and self-reflect on) how clinicians may make assumptions about what prognostic information patients/families want to hear and how they want to hear it, as well as how clinicians may lack comfort in eliciting these preferences directly from patients/families.2. Recognize a deficit in stakeholder-driven guidance to encourage and support clinicians in provision of person-centered, timely prognostic communication in advanced childhood cancer and other pediatric serious illnesses. Key Message In the RIGHTime (Revealing Information Genuinely and Honestly across Time) study, we asked pediatric cancer patients, parents, and oncologists to describe best practices for disclosing prognosis. Preliminary analysis of oncologist data revealed diverse, and often conflicting, recommendations for prognostic communication and infrequent elicitation of patient/parent preferences prior to prognostic disclosure. Importance Provision of honest and timely prognostic information is essential in the care of children with advanced cancer and their families. Many patients and parents wish to hear clear information about prognosis, yet pediatric oncologists often delay or censor poor prognostic disclosure. Objective(s) The RIGHTime study aims to 1) partner with children with cancer, parents, and oncologists to characterize the “right” time and process for prognostic disclosure, 2) use participatory research principles to develop a framework and clinical tool to promote timely, person-centered prognostic communication, and 3) assess the feasibility and acceptability of a clinical tool in a single-arm pilot study. Scientific Methods Utilized In phase 1 of the RIGHTime study, we interviewed 90 pediatric cancer patients (aged 12-25) across the illness course, parents, and oncologists to elicit stakeholder preferences and recommendations for timing, content, and delivery of prognostic information. We conducted a rapid qualitative approach to identify core themes aligned with the National Cancer Institute's core communication domains. Results Here we present findings from interviews with a purposive sample of 20 pediatric oncologists from 6 institutions across 5 states. Oncologists described divergent “best practices” for provision of high-quality prognostic communication, with some oncologists advocating for blunt, upfront disclosure and others preferring softened language, avoidance of percentages, or disclosure only when asked directly. Nearly all oncologists emphasized the importance of an individualized approach, with communication tailored to the preferences of patients and families; however, very few oncologists used specific language to preemptively elicit these preferences. Conclusion(s) Pediatric oncologists hold diverse, and often conflicting, philosophies about the “right” way to disclose prognosis to patients and families. Impact Future analyses will focus on the perspectives of patients and parents, with triangulation of findings and stakeholder-driven conceptual framework analysis to develop an evidence-based clinical tool to support person-centered prognostic disclosure in advanced childhood cancer. Keywords Communication and prognostication/Palliative care in oncology