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Grant Details

Grant Number: 1R01CA315233-01 Interpret this number
Primary Investigator: Politi, Mary
Organization: Washington University
Project Title: Clarifying Imaging Reports to Reduce Anxiety and Improve Understanding of Care Needs Among Adult Survivors of Pediatric Brain Cancer
Fiscal Year: 2026


Abstract

Project Summary/Abstract Advances in treatment have led to a growing population of survivors of pediatric brain cancer. Survivors of pediatric brain cancer experience a high level of distress and fear of cancer recurrence. Fear of cancer recurrence is associated with lower quality of life, disturbed sleep, trouble concentrating, depression, and anxiety. A related feeling called “scanxiety” involves acute worry before, during, and after surveillance scans for cancer. Fear of cancer recurrence and scanxiety can be reduced by short wait times for imaging results, supported by patient portals. However, imaging reports often add to people's anxiety when they include confusing terms and details, and are released in patient portals before a clinician discusses them with patients. This study will test clarified imaging reports to improve survivors of pediatric brain cancer's anxiety, fear of cancer recurrence, and understanding of follow-up care needs. To our knowledge, there are no interventions that have tested how clarifying imaging reports can improve these outcomes for survivors of pediatric brain cancer as they begin self-managing their care as adults, rather than with family and/or clinical teams during pediatric care. Aim 1 will explore preferences for receiving and delivering surveillance imaging results in patient portals through interviews with adult survivors of pediatric brain cancer and their care team. Aim 2 will design and test a flow chart and clarified imaging reports including key findings and plain language best practices combined with feedback from Aim 1. We test how usable this report is before implementing it with patients. Aim 3 will evaluate the flow chart and clarified reports with adults receiving follow-up care after pediatric brain cancer in a single-site randomized trial (N=128, 64/group). We will measure scan-related anxiety (primary), fear of recurrence, knowledge of care needs, self-efficacy to advocate for care needs, and number of portal messages sent to clinical teams after scans. We will also evaluate clinician perspectives on the feasibility, acceptability, and sustainability of the intervention for long-term implementation. This work can improve the way we swiftly deliver surveillance scan reports to improve patients' care experience. It can reduce clinicians' workload associated with patients' confusion and anxiety about reports. Results can be applied to other portal reports in the future, and future work could build AI-generated data or summaries into our intervention.



Publications


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