Grant Number:	1R21CA290223-01A1 Interpret this number
Primary Investigator:	Sisk, Bryan
Organization:	Washington University
Project Title:	Cancer Care Companion: an Electronic Health Record Tool to Improve Information Exchange and Self-Management in Pediatric Cancer
Fiscal Year:	2025

Project Summary High-quality communication between clinicians and parents is critical to providing optimal care for pediatric cancer. Yet, almost no communication interventions exist in pediatric cancer. To address parents’ unmet communication needs after diagnosis, it is imperative to develop an effective, parent-centered, and scalable communication tool specific to the needs of families affected by pediatric cancer. This study proposes to engage parents of children with cancer to develop and pilot an electronic health record (EHR)-based communication tool using participatory design methods. To ensure this tool is useful, feasible, cost-effective, and designed for dissemination, the investigators will co-develop an EHR tool that adapts the existing Epic MyChart Care Companion to meet the needs of children with cancer and their families. Care Companion is an interactive, highly adaptable Epic MyChart add-on that can incorporate video- and text-based educational materials, symptom surveys, and links to initiate portal messages. The study team found that 74% of children’s hospitals use Epic EHR, which will support broad dissemination of this Cancer Care Companion. This study will fulfill the following aims. Aim 1: To develop, refine, and prioritize content and functions to be incorporated into the Cancer Care Companion, in partnership with parents of children with cancer and pediatric oncology clinicians. The study team will facilitate 6 participatory design workshops with 6 to 8 participants per workshop. The team will host 2 workshops for clinicians and 4 for parents. Each workshop will include 2 stages: discovery and prototyping. The team will identify essential topics for informational materials, sources of high-quality information, pertinent symptoms to track, and appropriate clinical workflows. The team will purposively sample for 25% of parents from racial and ethnic minorities for participation in design sessions. In collaboration with the St. Louis Children’s Hospital Epic Build Team, the team will build the Cancer Care Companion. Aim 2: To pilot and evaluate the Cancer Care Companion at St. Louis Children’s Hospital with up to 40 parents of children with cancer. The investigators will assess the feasibility, acceptability, and appropriateness of the Cancer Care Companion among parents of children with newly diagnosed cancer. After 3 months of use, the team will perform qualitative interviews with parents to assess their positive and negative experiences and possible modifications to improve the tool. The team will track utilization and administer validated measures to assess the tool’s acceptability, appropriateness, and feasibility. This proposal aligns with research priorities of the National Cancer Institute and addresses the critical need for high-quality communication in pediatric cancer, especially near the time of diagnosis. Findings from this study could serve as a model communication tool for long-term cancer survivors or other serious pediatric illnesses. These findings will also be essential to support a future multicenter clinical trial.





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