Measuring what matters to patients

The Canadian Institutes of Health Research has sponsored our study where we will develop 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. 

Solid-organ transplantation is a life-saving treatment. Many recipients, however, still have symptoms, such as fatigue, pain, anxiety or depression after their transplant. Patients with these symptoms may end up in hospitals more often or even die sooner. Current post-transplant treatment does not include screening for these symptoms, which often go undiagnosed and untreated.

Patient Reported Outcome Measures (these are questionnaires to detect symptoms) are helpful in detecting emotional and physical symptoms. Using Patient Reported Outcome Measures can improve doctor-patient communication, patient satisfaction and quality of life.

To use these tools in clinical practice we need tools that are accurate, and don’t take too long to complete. The Patient-Reported Outcomes Measurement Information System – Computer Adaptive Testing (PROMIS CAT) tools, developed by the National Institutes of Health in the United States may be such tools. In the proposed research project we will validate PROMIS CAT questionnaires and combine a decision support toolkit for professionals with the questionnaires that patients can complete.

We hope that our electronic Patient Reported Outcome Measure toolkit will become an important tool in helping transplant clinicians to provide more effective, patient-oriented care.