Can you please describe your project?
Simply this project is about building a tool to help solid organ transplant (SOT) patients deal with physical and emotional symptoms. SOT saves lives and improves quality of life. In 2017, nearly 3,000 SOTs were performed in Canada. However, up to 50% of transplant recipients still have pain, sleep problems, side effects of the transplant medications, and emotional distress from the illness, donor-related concerns, rejection anxiety, and fears about death. These concerns often go unnoticed and untreated, leading to poor quality of life, unnecessary suffering, emergency visits and hospital admissions. Emotional distress causes up to 30% of patients to fall off their treatment plan. SOT patients have often asked for help with these symptoms as a top research priority. Addressing these symptoms improves patient-doctor communications, helps patients stick to their treatment plan and improves quality of life.
A tool called Emotion And Symptom-focused Engagement (EASE) was developed to relieve similar distress in patients with leukemia through counselling and early detection and management of physical symptoms. Research has shown that EASE reduces distress and improves quality of life for patients newly diagnosed with leukemia. We are working with the developers of EASE at Princess Margaret Cancer Centre and with patients and transplant professionals at UHN to adapt EASE to the needs of SOT recipients and candidates. In this project, we will test the new program (EASE-SOT) in patients to see if it can be used with SOT recipients and how well they like it. These results will tell us how well and easily the tool can be used routinely in clinics. If the EASE-SOT tool is usable, we will plan a larger study to confirm its usefulness. We expect that the new tool will deliver better care by bringing the patient voice to the forefront of transplant care; greater satisfaction with care among patients and doctors; better general health after transplant; better quality of life for SOT patients and caregivers; and cost savings for healthcare systems.
Why is this research important to you?
I am very glad that I can work in the field of transplantation. Successful organ transplant is life-saving for many patients, life-altering, life-improving for others. Many patients still cannot enjoy the full benefits of the transplant because of ongoing physical and chronic symptoms and the impact of those symptoms have on their everyday life and on their quality of life. While not all symptoms can be fully eliminated, many of these symptoms can be better managed, and their impact on quality of life reduced. For many years we have been studying the tools that can precisely and efficiently measure and monitor symptoms. This project will enable us to take the next step and start using at least some of those tools in the clinical care of transplant recipients.
Why is your focus on mental health?
My wife, Dr. Marta Novak, is a psychiatrist and we have been conducting these studies together for many years. Furthermore, I can also see in my post-kidney transplant clinic the impacts of mental health concerns of people`s life – and this has been further emphasized by the impact of the COVID pandemic. Importantly, I think the current pre- and post-transplant care does not pay enough attention to the assessment and support of mental health concerns for patients and their families.
How do you think this research will advance the field?
The EASE intervention has been developed by Drs. Gary Rodin and Camilla Zimmermann at the Princess Margaret Cancer Center for patients with leukemia. During this project we will adapt the EASE intervention for solid organ transplant recipients – so we will have a clinical tool ready to be used. Our project will also answer the question if a large study to assess the effectiveness of this tool will be feasible.
What are some of the challenges that you have faced with this research? How have you overcome them?
We have a large collaborative team that works on this, that includes several patients with different organ transplants and several clinicians and researchers. It has not always been easy to find the time for the meetings to advance the work. Furthermore, with COVID we had to use the virtual platforms to meet. While these platforms allow increased efficiency, we miss the direct, in person interaction.
What are the next steps for this project?
We have revised the intervention manual based on our previous work and experience. We will start recruiting a small number of patients to start using this intervention and collect detailed intervention to see if further adaptation is needed. We are then going to apply for full funding from CIHR in the fall and we hope to get the pilot study going in 2023.