Improving care for transplant patients using standard questionnaires to measure symptoms, distress and quality of life

Although solid-organ transplantation is a life-saving treatment, almost half of recipients experience symptoms of fatigue, pain, anxiety, or depression after the transplant. Current post-transplant care does not include screening for these symptoms which may go undetected and can even lead to hospitalization. Better addressing these symptoms can improve patients’ quality of life and health.

Patient Reported Outcome Measures (PROMs) are questionnaires that can be used to detect these emotional and physical symptoms. When PROMs are completed electronically by patients, it allows for real-time evaluation of results, which can improve physician-patient communication, patient satisfaction, and survival rates.

The Patient Reported Outcome Measurement Information System (PROMIS) computer adaptive testing (CAT) tools are generic PROMs developed by the National Institutes of Health to assess physical, emotional, and social aspects of life relevant across chronic diseases. CAT improves accuracy and reduces the amount of time needed to complete questionnaires because it only shows relevant questions to patients based on their previous answers.

The use of electronic PROMs has not been evaluated in transplant care, but has the potential to benefit many patients. In this project we will compare the PROMIS CAT to similar questionnaires that are currently used to determine its precision. Next, we will build a patient-centered electronic PROMs toolkit to guide transplant clinicians in the use of PROMIS CATs and establish how to address patient PROM results through clinical care pathways. Finally, we will conduct a study to determine if the PROMIS CAT toolkit is acceptable and practical for use in transplant clinics. We hope that our electronic PROM toolkit will become an important tool in helping transplant clinicians provide more effective, patient-centered care.

This five-year project is generously funded by a Canadian Institutes of Health Research Project Grant. This project will bring together a dozen researchers and patient partner organizations such as Heart-Links, the Canadian Transplant Association, and the Canadian Donation and Transplant Research Program (CDTRP).