The Explore Transplant Ontario (ETO) pilot study assessed the feasibility and efficacy of ETO, a transplant education package, to improve transplant-related knowledge and transplant readiness among patients who have end-stage kidney disease (ESKD) and are receiving dialysis. This 2016-2017 study was conducted at the dialysis units of University Health Network and Humber River Hospital.
The study was designed by Drs. Mucsi and Novak of UHN and Dr. Amy Waterman, a psychologist and health education researcher from UCLA. The original Explore Transplant education program was designed by Dr. Waterman and has been used by thousands of dialysis units in the United States. This program was adapted for Ontario by Drs. Novak, Mucsi and Waterman between 2014 and 2016.
The results of the ETO pilot study will inform the implementation of the ETO program in the province-wide “Access to Kidney Transplantation (AKT)” program, a joint initiative of the Ontario Renal Network and the Trillium Gift of Life Network to improve access to kidney transplantation and to increase living donor kidney transplantation in Ontario.
The rationale for exploring transplant
Patients with chronic kidney disease (CKD) frequently experience a progressive loss of kidney function. When the kidney function falls below 15% of normal, the stage is called Stage 5 CKD, or end-stage kidney disease (ESKD). Once patients reach this stage, they require renal replacement therapy (RRT), that is, dialysis or kidney transplantation, to survive. Although dialysis is utilized more frequently, kidney transplantation (KT) is the best treatment for ESKD, since it provides longer life expectancy and better quality of life. Living donor kidney transplant (LDKT) is the preferred form of KT since it provides better life expectancy and the waiting time is much shorter (6-12 months compared to 4-10 years for deceased donor KT).
In spite of this, many patients who could benefit from LDKT currently do not explore this treatment option.
Overcoming barriers to transplant by educating patients
Prior research has indicated that patients who receive personalized transplant education are more likely to be evaluated and waitlisted for kidney transplants. But in Ontario, only 10-18% of dialysis patients are on the transplant wait list, suggesting that this optimal treatment is underutilized. Furthermore, there is high variability in the proportion of transplant referrals and waitlisted patients in the various chronic kidney programs throughout Ontario. Language and cultural differences, patient anxiety or depression, and a lack of time for healthcare providers to educate patients, can be barriers preventing patients from pursuing transplant. Transplant education, specifically the ETO program, aims to overcome such barriers by providing patients and their families with tailored resources on kidney transplant and living donation to address their questions, concerns and knowledge gaps.
The pilot study
The ETO pilot study was a prospective, parallel-arm study conducted in two dialysis units. We started this study in June 2016 in the dialysis units at the UHN Toronto General Hospital and Humber River Hospital. We enrolled patients who had been on dialysis for longer than 3 months, spoke English and were between 18 to 80 years of age. UHN (104 participants) was the control site, while Humber River (125 participants) was the intervention. At both sites, participants went through identical steps except that Humber River participants received an ETO education package to take home, while UHN participants received the standard patient education already offered on-site.
The ETO study consisted of multiple visits with patients:
- Visit 1 (Baseline): Patients completed a set of questionnaires, including a socio-demographic questionnaire and the Transplant Decision Making Survey (transplant knowledge assessment, Transplant Self-Efficacy and decisional balance questionnaires). After participants completed these, the Humber River patients received the ETO educational package (consisting of brochures and fact sheets for patients and their families, and a DVD with 4 videos in which dialysis patients, kidney donors and transplant recipients discuss their experiences and decisions).
- Follow-up visits: After Visit 1, follow-up visits were conducted 2 weeks, 4 weeks, 6 weeks, and 10 weeks later. At each of these visits, the researcher asked several questions about whether the participant had thought about undergoing transplant or discussed this with someone. These visits gave patients the chance to ask any questions they may have had about transplant. At the intervention site we also asked if participants had used the educational material.
- Post-Test 1 (3 months after Visit 1) and Post-Test 2 (3 months after Post-Test 1): At these visits, patients at both sites completed the Transplant Decision Making Survey to track changes in their readiness and attitudes toward transplantation as well as any retention or increase in their transplant knowledge.
The study is still ongoing as of June 2017, but Post-Test 2 data collection will be completed by the end of June 2017. Our preliminary findings suggest a significantly greater improvement in patients’ transplant knowledge and self-efficacy between Visit 1 and Post-Test 1 at the intervention site compared to the control dialysis unit. About 1/3 of patients in the intervention arm have indicated they did not use the package at all, prompting us to probe further the relationship between patients’ attitudes and their actual usage of the package, as well as selected socio-demographic variables. From our preliminary results it appears that watching the ETO videos was more effective in increasing knowledge and self-efficacy compared to only reading the education brochures.
The ETO pilot findings will inform the content and delivery structure of transplant education in the province-wide “Access to Kidney Transplantation (AKT)” initiative, organized by the Ontario Renal Network and the Trillium Gift of Life Network. The program will launch in September 2017 in 13 out of Ontario’s 26 regional kidney care programs. A detailed analysis of our experience in the ETO pilot study will inform the finalization of the transplant education efforts in the AKT project. To achieve the goal of AKT—that is, to increase living donor kidney transplantation in Ontario by at least 20% by the end of 2020—we will provide the kidney programs with high quality kidney transplant education materials, including the Explore Transplant Ontario programs. We will also provide appropriate training and education about kidney transplant for staff working in the participating kidney programs. Finally, we will organize an innovative education support system to ensure the success of this important initiative and to improve access to kidney transplantation for patients with end-stage kidney disease in Ontario.