ePROM Project

Electronic Patient Reported Outcome Measures (ePROMs) to Improve Patient Centered Solid Organ Transplant Care – Study Summary

Tens of thousands of Canadians suffer from advanced organ failure. Heart, kidney, kidney-pancreas, liver, and lung transplantation are life-saving procedures.

Organ 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.

The purpose of this study is to identify and prioritize a set of patient-reported outcomes to be included in a patient-centered electronic assessment and response toolkit. This toolkit will help transplant recipients and clinical care teams identify relevant physical and psychological
symptoms that require further assessment and potential intervention, in order to improve their care. For this study, we will recruit heart, kidney, kidney-pancreas, liver, and lung transplant recipients as well as caregivers and family members of patients to participate in focus group or interview discussions. We will additionally recruit transplant professionals (e.g. nurse coordinators, social workers, physicians) to participate in semi-structured interviews.

Regarding focus groups and interviews they will take place either in person in groups of 6-8 Or over the phone in a one on one interview, if a participant is unable to come to an in-person session. In person participants are compensated $30 for their time and travel.

Focus groups and interviews will discuss topics including symptom experience, medication side effects and adherence, activity/participation limitations, and quality of life (QoL).

This study is being led by Dr. Istvan Mucsi, a transplant nephrologist at the University Health Network.

You can contact the research team at 416-340-4800 x 6582, the Principal Investigator, Dr. Istvan Mucsi at 416-340-4084 or email us back at this address (transplant@nefros.net).