ODTC Project Snapshot: Implementation and Evaluation of an Electronic Patient-Reported Outcome Measure Platform in Pediatric Transplantation

Implementation and Evaluation of an Electronic Patient-Reported Outcome Measure Platform in Pediatric Transplantation

What is this project about?

Project background

Patient-reported outcomes are becoming increasingly recognized as a key component of quality care. Patient-reported outcomes refer to information on a patient’s health condition and care experience that comes directly from the patient without interpretation of their response by a clinician or other individual. This information is typically collected via questionnaires completed by patients known as patient-reported outcome measures (PROMs). PROMs can comprise information about symptoms, functional status, satisfaction, treatment adherence, and domains of overall well-being and quality of life.

Objectives

This project aims to transform the delivery of care, and improve the health outcomes of pediatric solid-organ transplant patients in Canada by implementing patient-reported outcome measures (PROMs) as an innovative approach to clinical care in pediatric transplantation.

Overview of activities

  • Create and design an ePROM software platform – Voxe – that will collect and report PROM data to inform clinical practice in a pediatric transplant population.
  • Conduct usability testing of Voxe with patients, health care providers and administrators, and incorporate refinements.
  • Provide professional education and coaching for SickKids Transplant and Regenerative Medicine Centre (TRMC) health care providers and administrators in the use of the platform and in how PROM data can be used to inform care.
  • Implement and evaluate implementation of Voxe at SickKids with a future goal of spread to other pediatric transplantation centres.

How will the project improve the organ donation and transplantation system in Canada?

The project will contribute to:

  • Ensuring better transplant outcomes for the pediatric population.
  • Using PROM data for quality improvement processes, research and supporting a person-centered approach to care.
  • Providing training to health care providers to use ePROM software platform and deliver quality services in pediatric transplantation.
  • Sharing lessons learned with other transplant centres across Canada to support the spread of Voxe integration and implementation.

The project lead

The project is led by the Hospital for Sick Children (SickKids).

Dr. Samantha J. Anthony, Health Clinician Scientist The Hospital for Sick Children University of Toronto

“Voxe leverages eHealth technology as an innovative approach to capture the voices of children in clinical practice and to understand children’s perspectives of their illness experience.”

EXPECTED PROJECT COMPLETION IN 2022

 

 

The Organ Donation and Transplantation Collaborative is an initiative led by Health Canada with provinces and territories (except Québec), Canadian Blood Services, patients, families, clinicians and researchers. Funded by Health Canada, the project Implementation and Evaluation of a Patient-Reported Outcome Measure Platform in Pediatric Transplantation contributes to the Collaborative’s vision to achieve organ donation and transplantation system improvements that result in better patient outcomes and an increase in the number and quality of successful transplantations. For more information, please consult the Organ Donation and Transplantation Collaborative (the Collaborative) website: https://tinyurl.com/ODTCollaborative.