Transplantation saves lives and vastly improves quality of life for transplant recipients. At the same time, it can leave patients with scars that go beyond the physical. In fact, approximately half of organ transplant recipients suffer from depressive symptoms, anxiety, pain, fatigue and sleep disturbances. These symptoms are often under-reported and under-managed.
“Mental health issues are not necessarily front and center in the day-to-day management of these patients although we know […] post-transplant outcomes are associated with these issues,” says Dr. Istvan Mucsi, a nephrologist at UHN’s Ajmera Transplant Centre. Dr. Mucsi has been researching interventions to improve mental health that meets the unique needs of transplant patients and people living with chronic kidney disease. He has been collaborating for many years with Dr. Marta Novak, a psychiatrist who established the Psychonephrology Unit in UHN’s Centre for Mental Health.
Dr. Mucsi and his colleagues are leading the charge to bring a unique program – called the Emotion and Symptom-focused Engagement for Solid Organ Transplant recipients (EASE-SOT) intervention – to the Ajmera Transplant Centre to support the full spectrum of care needs for transplant patients.
Meeting the mental health needs of transplant patients
The EASE intervention was adapted from the one originally developed by Dr. Gary Rodin at the Princess Margaret Cancer Centre to support patients with acute leukemia. The adapted version, EASE-SOT, aims to help patients manage the physical and psychological symptoms they face as they transition into life post-transplant. These symptoms include feelings of distress and anxiety associated with their transplantation experience as well as changes to their lifestyle post-transplant. EASE-SOT includes supportive counselling sessions and symptom screening to closely support and monitor patients’ physical and emotional symptoms. The symptom screening tools will help inform the patient’s care team and enable them to take action to manage symptoms when needed.
As Dr. Mucsi explains, challenges like mental health concerns are often seen as unrelated to the transplant itself. He says, “At the same time, it’s very difficult to say that these are not transplant-related issues. Clearly mental health issues are closely related with medication adherence, overall wellbeing and quality of life. Our clinical outcomes depend on these conditions and their appropriate management.”
The EASE-SOT intervention was shaped by a series of in-depth conversations that the research team held with transplant patients, caregivers and health care workers. This provided a variety of perspectives to support the program’s goal of providing patients with meaningful support.
“These conditions – organ failure and transplant – are extremely medically and psychosocially complex conditions. We need diverse experience and expertise,” says Dr. Mucsi. That is why the EASE-SOT team draws on support from psychosocial, supportive, palliative and transplant care experts, united in the goal of caring for the full spectrum of transplant patient needs.
A unique-in-the-world program
UHN, home to Canada’s largest and most successful transplant program as well as programs in mental health and palliative care, is the perfect place to make a program like EASE-SOT successful.
This will be the first program of its kind in the world. Once developed and tested, the EASE-SOT program will be part of all transplant patients’ care at UHN, not just those who are showing signs of mental health concerns. According to Dr. Mucsi, “providing this psychotherapy enables patients to think about mental health issues a bit more openly and legitimizes for patients that these are problems that they can bring up with the team.”
The team hopes that providing patients with psychotherapy will equip them to deal with future stressors as well.
Caring for the carers
The EASE-SOT Program will first need to be carefully assessed through a series of studies to demonstrate that it is feasible and effective before it can be rolled out to transplant patients. Already, Dr. Mucsi and his colleagues have the next phase of the program in mind: supporting caregivers. Family and loved ones play an enormous supportive role in a transplant patient’s care. Despite the significant pressure and stress caregivers face, there is little support available to them.
Over the past several years, Dr. Mucsi and his colleagues have heard directly from caregivers that they need help.
“Their presence and contribution is essential but their care needs may not be fully recognized and addressed,” Dr. Mucsi says. He and his colleagues are participating in an exciting pan-Canadian study to learn even more about how transplant centres can support caregivers.
In the years to come, the EASE-SOT program could represent a real shift in how transplant centres in hospitals around the world look after patients and caregivers – from supporting patients’ mental health to helping caregivers stay strong during difficult times.
No one ever changed the world on their own but when the bright minds at UHN work together with donors we can redefine the world of health care together.