Explore Transplant Ontario: Providing Education to Improve Access to Kidney Transplantation and Living Donation
By: Istvan Mucsi, MD, PhD
Associate Professor of Medicine, University of Toronto
Transplant nephrologist at the Multi-Organ Transplant Program and Division of Nephrology, University of Health Network
The public is generally well informed of conditions like diabetes and hypertension—their risk factors, treatments, and repercussions. However, despite extensive public awareness, many remain unaware of an important possible consequence of these conditions: kidney failure. At its most severe presentation, End Stage Kidney Disease (ESKD), the kidneys function below 10% of their normal activity and require Renal Replacement Therapy (RRT). About 10% of Ontarians live with some degree of kidney disease and more than 17,000 suffer from ESKD, underscoring the importance of the public’s understanding of the risk factors and implications of these conditions.
Considering the essential role of the kidneys in filtering blood, ESKD patients must receive RRT to stay alive. RRT takes one of two forms: dialysis, in which blood is cleansed by a machine or through the internal membrane of the abdomen, and kidney transplant from a living or deceased donor, a form of RRT associated with better health outcomes and quality of life. Yet, despite the undeniable advantages over its alternative, only about 15% of the 11,000 dialysis patients in Ontario are on the transplant waiting list, owing to various barriers to this form of RRT. For example, many of the patients on dialysis who may be approaching ESKD may not have considered the possibility of transplant, and their families are frequently unaware that they could be living donors for their family members. They may have questions and concerns about the surgery and recovery, and face challenges in facilitating the process even when provided with information regarding their treatment options. Furthermore, cultural differences, language barriers, anxiety and depression, and lack of time to educate providers present additional barriers to transplantation.
To improve patients’ understanding and utilization of optimal treatment options for ESKD, Dr. Istvan Mucsi, a nephrologist at the Multi-Organ Transplant Program at University Health Network (UHN), Dr. Marta Novak, a psychiatrist at UHN, and Dr. Amy Waterman, an Associate Professor at the University of California-Los Angeles, have teamed up with 25 health professionals and patient representatives to create a transplant education program called Explore Transplant Ontario (ETO). ETO is based on the Explore Transplant program, created by Dr. Waterman, which is currently used in over 3,000 dialysis units across the United States. To adapt the program to the Ontario health care environment, the team reviewed the original program and created videos to explain the process of donor and recipient selection, transplant surgery, and post-transplant care in Ontario, and included real-life transplant stories from patients and their living donors, who shared their transplant and donation experiences. Furthermore, the ETO package is designed to address common concerns about deceased and living donor transplantation, help patients consider their motivations to pursue transplant, and present a series of actions that interested patients can take to pursue transplant. All in all, in their collaborative work, this team of nephrologists, nurses, and patient educators has adapted the program to Ontario. Together, they provide patients from Ontario hospitals, dialysis units, and transplant centers with information about this important treatment option.
Dr. Mucsi and his group strive to make ETO available to every kidney failure patient, family member, and health care professional to ensure access to resources that are needed to make an informed decision about pursuing kidney transplantation. The ETO program was officially introduced to a professional audience in March 2016, and on May 20 of that year, approximately 75 physicians, nurses, transplant coordinators, and educators, both from Ontario and out-of-province, attended the ETO Training Day at the UHN. During this full-day workshop, Drs. Mucsi, Novak, and Waterman introduced the ETO program and provided participants with resources and advice to help patients explore transplant at their units. Subsequently, Drs. Mucsi and Novak, the co-leads of the Kidney Health Education and Research Group, began the ETO pilot study in June, using a prospective, non-randomized, parallel group design to test the feasibility and efficacy of the ETO package in instilling transplant knowledge and readiness among dialysis patients. Between June and November, 228 patients were enrolled from two outpatient hemodialysis units: 103 at the control site, Toronto General Hospital (TGH), and 125 at the intervention site, Humber River Hospital (HRH). At baseline, patients completed standard questionnaires to assess their transplant knowledge, confidence, and self-efficacy, as well as a sociodemographic survey using a tablet-based electronic data capture system. At HRH, patients received the ETO package immediately upon completion of baseline data collection and were presented the ETO videos while undergoing their dialysis. Following the intervention, research assistants conducted short follow-up visits with patients at both sites at 2, 4, 6, and 10 weeks after enrolment. At these visits, patients were asked if they were considering living or deceased donor transplant, if they had spoken to anyone about transplant recently, if they utilized the ETO package (intervention site only), and if they had any questions. Between January and April 2017, patients at both sites were asked to complete the post-test questionnaires, which, once again, measured their transplant knowledge, readiness, and self-efficacy.
Despite the participating dialysis units’ geographical proximity and somewhat similar baseline characteristics, there was a significant difference in the average baseline transplant knowledge between the participating patients at HRH and control patients at TGH. Preliminary analysis of results revealed that the mean transplant knowledge score of HRH patients increased significantly, especially among those who utilized the ETO package. In addition, improvements in self-efficacy were also noted. Lastly, the study was well received by patients and staff in both dialysis units, as both rated their experience with the ETO research team as positive, noting the videos and team were helpful in engaging with others about transplant.
The Kidney Health Education and Research group has presented preliminary findings at the 2016 Canadian Society of Transplantation and the 2017 American Transplant Congress conferences. The study is now in its final phase, post-test II, which will evaluate participants’ long-term knowledge retention. Ultimately, ETO can potentially be integrated into clinical care to help improve patients’ understanding of the various aspects of the transplant process. ETO will be a key component of the Transplant Education Pillar of the province-wide Access Kidney Transplantation (AKT) trial, led by Dr. Amit Garg, in which. Drs. Novak and Mucsi co-lead the education task force. This comprehensive, multicomponent strategy, organized by the Ontario Renal Network and Trillium Gift of Life Network, aims to improve access to kidney transplantation and living kidney donation in Ontario and will be launched in September 2017. Over the next five years this quality improvement initiative, which will include all 26 regional chronic kidney disease programs in Ontario, will utilize an “audit and feedback” approach to enhance transplant education, patient volunteering (transplant ambassadors), and administrative support to increase transplant waitlisting and living kidney donation in the province.