Heart Transplant experiences at Heartlinks

Heartlinks is a heart transplant support group that hosts events where patients and caregivers have to opportunity to socialize and discuss important topics related to heart transplants. On Oct-5^th 2019, Dr. Istvan Mucsi attended a Heartlinks event where cardiologist Dr.Carolina Alba gave a great talk on research and program updates in Heart Transplantation at the University Health Network.

At the event, Dr.Mucsi spoke about different the physical and emotional symptom burden experienced by transplant recipients, and the use of questionnaires called Patient Reported Outcome Measures to detect these symptoms. He also introduced our Canadian Institutes of Health Research sponsored study to the audience. In this research where we will be developing an electronic patient reported outcome measurement toolkit for clinical use in transplant recipients.

Solid-organ transplantation is a life-saving treatment, however, many recipients still experience bothersome symptoms, such as fatigue, pain, anxiety or depression after their transplant. These symptoms may have a substantial impact on patients’ quality of life. The research proposed by Dr. Mucsi`s group will improve the detection and management of these symptoms and will improve patient satisfaction and quality of life.

We had interesting and insightful discussions with the attendees and hope to continue to support Heartlinks with their wonderful initiatives. We look forward to the support and participation of heart transplant recipients and caregivers to help us develop this toolkit and provide their perspectives in focus group discussions.