Developing an Electronic Patient Reported Outcome Measures Toolkit

The Canadian Institutes of Health Research has sponsored our study where we will be developing an electronic Patient Reported Outcome Measures toolkit intended for clinical use in transplant recipients. This toolkit will help transplant recipients and clinical care teams identify relevant physical and emotional symptoms that require further assessment and potential intervention in order to improve their care. 

As part of this project, we will engage solid organ transplant recipients and their caregivers in focus groups discussions to identify and prioritize symptoms and concerns to be included for regular assessment in the toolkit. 

Tens of thousands of Canadians suffer from advanced organ failure. Heart, kidney, kidney-pancreas, liver, and lung transplantation are life-saving procedures. Transplant also improves the symptoms that patients experience as a result of organ failure, as well as physical and emotional functioning and quality of life. 

Still, many transplant recipients often suffer from ongoing physical and emotional symptoms, stress, or side effects of medications. These concerns are under-reported, under-recognized, and under-managed. Some doctors use questionnaires called Patient Reported Outcome Measures to detect emotional and physical symptoms.

We look forward to the support and participation of transplant recipients and caregivers to help us develop this toolkit and provide their perspectives in focus group discussions.