First Patient and Caregiver Advisory Panel, February 14, 2020

On February 14, 2020, we had our first patient and caregiver advisory panel. Kidney, heart, lung and liver transplant recipients as well as a heart transplant caregiver were a part of our advisory panel and discussion.

Our project is looking at improving care for transplant patients using standard questionnaires to measure symptoms, distress and quality of life. As a part of this project we will compare the Patient Reported Outcome Measurement Information System (PROMIS) computer adaptive testing (CAT) tools to similar questionnaires to determine its precision. We will use this information to build an electronic patient reported outcome measure toolkit to guide transplant healthcare providers on how to use PROMIS CATs and how to address the results from ePROMs with clinical care pathways. As we develop this toolkit, we will be working alongside our patient and caregiver advisory panel to go over our study milestones and discuss our findings.

We value the perspective of patients and caregivers and are looking forward to working together to develop an electronic PROM toolkit that will help transplant clinicians provide more effective, patient-centered care.