Explore Transplant Ontario: Adapting the Explore Transplant Education Program to Facilitate Informed Decision Making About Kidney Transplantation

Abstract

Purpose: In this article, we describe a province-wide collaborative project in which we adapted the Explore Transplant (ET) education program for use in Ontario, Canada, to develop Explore Transplant Ontario (ETO). Kidney transplantation (KT), especially living donor kidney transplantation (LDKT), is the best treatment for many patients with end-stage kidney disease (ESKD), with the best patient survival and quality of life and also reduced health care costs. Yet KT and LDKT are underutilized both internationally and in Canada. Research has demonstrated that patients with ESKD who receive personalized transplant education are more likely to complete the transplant evaluation process and to receive LDKT compared with patients who do not receive this education.

Sources of information: Research expertise of the lead authors and Medline search of studies assessing the impact of education interventions on access to KT and LDKT.

Methods: The ET program, developed by Dr Amy Waterman, has been used in thousands of patients with ESKD in the United States to enhance KT and LDKT knowledge. To adapt this program for use in Ontario, we convened a working group, including patient representatives, nephrologists, transplant coordinators, dialysis nurses, and patient educators from all Ontario KT centers and selected dialysis units. In an iterative process concluding in a consensus workshop, the working group reviewed and edited the text of the original ET program and suggested changes to the videos.

Key findings: The adapted program reflects the Ontario health care environment and responds to the specific needs of patients with chronic kidney disease (CKD) in the province. The videos feature Ontario transplant nephrologists, transplant coordinators, and patients, representative of the ethnic diversity in Ontario, sharing their transplant experience and expertise. Despite the changes, ETO is consistent with the quality and style of the original ET program. At the end of this article, we summarize subsequent steps to test and utilize ETO. Those projects, specifically the ETO pilot study and a multicomponent quality improvement initiative to increase utilization of KT and LDKT across Ontario, will be described in full in future papers.

Limitations: This article describes a provincial initiative; therefore, our findings may not be fully generalizable without further considerations. The adapted education program has not yet been tested in large trial for effectiveness.

Implications: As a program grounded in the theoretical model of behavior change, ETO places patients with ESKD at the center of a complex process of navigating renal replacement therapy modalities and acknowledges a broad range of patient values, priorities, and states of readiness to pursue KT.

Keywords: chronic; decision making; donation of organs and tissues; education; kidney failure; kidney transplantation; living donors; patient education; psychology; surgery; utilization.