The EnAKT LKD quality improvement intervention

The 4 components of the EnAKT LKD quality improvement intervention (quality improvement teams, education, support from kidney transplant recipients and living kidney donors, and performance monitoring) are described in detail below. CKD programs were encouraged to implement all intervention components, but this was not mandated, and programs were given flexibility in how they implemented each component.

The aim of this component is to establish a local quality improvement team to examine, understand, and improve local program performance, implement the intervention components, and champion local initiatives to enhance access to kidney transplantation and living kidney donation. The teams include a champion (the team lead), an executive sponsor (usually a member of hospital administration), local personnel with quality improvement experience, a clinical leader, and at least 2 patients, at least one of whom is also involved in TAP (more details provided in component 3).⁴²

A 2-day, in-person quality improvement workshop was held for all team members. The workshop provided training on solving quality-of-care problems within healthcare organizations with a specific focus on enhancing access to kidney transplantation and living kidney donation.⁴³ Training modules were posted online after the workshop. Each CKD program in the intervention group received an instructional document titled “Quality Improvement Program Implementation Guide”, which describes the principles behind using quality improvement strategies to improve healthcare delivery and processes of care and advice on how to build a quality improvement team. Teams were given instructions on creating aim statements (i.e. actionable goals); for example:

At our CKD program, during the period from November 1, 2017 to October 31, 2018, we aim to increase the number of our patients who have a potential living donor contact the transplant center for evaluation from 20 per year to at least 25 per year.

Teams were also trained in using the Plan-Do-Study-Act (PDSA) model to carry out local improvement projects.⁴⁴ PDSA cycles are short, rapid-cycle changes that test potential “change” ideas on a small scale (i.e. tested within each QI team) (an example of a PDSA cycle worksheet can be found at http://www.ihi.org/resources/Pages/Tools/PlanDoStudyActWorksheet.aspx and instructions for the PDSA cycle in Supplemental Appendix 5). With guidance from the ORN-TGLN administration, each team developed a charter with program-specific aims and measures for tracking progress (an instructional document for creating the project charter is shown in Supplemental Appendix 6 and an instructional document for creating program-specific aims is shown in Supplemental Appendix 7). Teams presented their charters to the ORN-TGLN administration and to the other teams at the beginning of the trial for input and were encouraged to meet regularly during the trial to discuss, review, and develop a plan to improve performance.⁴⁵ Teams were encouraged to create process maps of their program’s current educational practices and transplant referral pathways and they reviewed their CKD program’s first performance report (see component 4). At the start of the trial period, quality improvement teams, TAP leads and co-leads (see component 3), transplant center nephrologists and coordinators, living donor program nephrologists and coordinators, and ORN-TGLN leadership and staff attended an in-person 2-day launch event for the trial. The launch event included lectures from experts on improving access to transplant and provided a detailed overview of the trial.

During the trial, quality improvement team leaders and other team members meet monthly via teleconference or in-person to share progress and to discuss strategies for overcoming barriers. In-person visits from the Provincial Medical Lead in Access to Kidney Transplantation occurred as needed. Additional provincial support and resources were given to 13 CKD programs, including $10 000 per year to support intervention implementation and other local initiatives. Administrative support was also provided by staff at the ORN and TGLN (approximately 3 full-time equivalent positions); these personnel included a business strategist, a senior analyst, an analyst, and a project manager.

This component aims to increase the knowledge that healthcare providers, patients, and their families have about kidney transplantation and living kidney donation. The education component is being implemented by an EnAKT LKD education team (led by 3 transplant education experts: I Mucsi, A Waterman, and D Belenko) in collaboration with each CKD program’s quality improvement team. Each program was given materials and methods to develop a strategy to improve kidney transplant education to best suit their local practice. Programs were encouraged to develop additional educational resources, optimize patient education infrastructure, and disseminate the EnAKT LKD education initiative to staff and patients. The education team provided additional support when needed. A more detailed description of some of the key elements is provided below.

To ensure providers have the knowledge and resources to provide high-quality transplant education to patients and potential living donors, several educational resources were developed and made available to healthcare providers in CKD programs as follows:

A set of up-to-date educational resources on transplant-related topics was collated, reviewed, and posted online at renalnetwork.on.ca/TransplantProviderHub (see Table 2 for key resources and see Supplemental Appendix 8 for an example document created for the EnAKT LKD trial on when to refer patients to a transplant center). This set of resources also included an app and an online calculator we adapted for healthcare professionals to estimate and communicate a patient’s predicted survival with a transplant versus dialysis in Ontario (http://dialysisvstransplant.ca).

Select Educational Resources on Kidney Transplantation and Living Kidney Donation Created for the Enhance Access to Kidney Transplantation and Living Kidney Donation Trial.

Slide decks and webinars were made on several topics, including the risks and benefits of transplantation (living and deceased), transplant referral and eligibility criteria, the deceased donor kidney allocation system, and the evaluation process for potential kidney transplant recipients and living kidney donors. Live webinars were recorded so that they could also be watched by staff at a later time.

Explore Transplant is a personalized education and coaching program designed to help kidney patients and their families fully consider transplantation and living kidney donation as treatment options.⁴⁶ In-person training on administering the Ontario version of this program (etontario.org) was provided at the trial launch event, with the option for CKD programs to request additional training during the trial as needed from the program creator (A Waterman). The training is tailored to frontline healthcare providers including nurses, nurse practitioners, social workers, and patients who are involved in educating patients about transplantation. The training includes an interactive group activity to help participants experience and understand 4 key concepts: considering transplant, transplant evaluation, living donor transplant, and making the decision.⁴⁶ Participants use role play to learn how to address questions or concerns that patients or family members may raise.

To ensure patients and potential donors have the knowledge to make informed decisions about transplantation and living kidney donation, a set of up-to-date educational resources was assembled, including the Explore Transplant Ontario educational package. Programs were also encouraged to host educational and social networking events.

An online resource hub for patients and individuals considering living kidney donation was created and posted online at https://renalnetwork.on.ca/TransplantPatientHub. The hub contains transplant-related educational materials including resources created by the ORN and patients on finding a living kidney donor (Supplemental Appendix 9). All materials, including brochures, videos, guides, and handbooks, were reviewed by multiple stakeholders, including patients, prior to their use.

The Explore Transplant Ontario program (including a mass production of educational DVDs for patients and informational packages) was offered at no charge to all CKD programs in the intervention arm.³⁵ The full content of Explore Transplant Ontario was made available for staff and patients at the CKD programs of the intervention arm on a password-protected website (etontario.org). Using a model of behavioral change, the Explore Transplant program guides patients through 5 stages of readiness that precede the adoption of a new health behavior (i.e. precontemplation, contemplation, preparation, action, and maintenance). Patients are coached to take meaningful actions toward considering and pursuing transplantation based on their stage of readiness. Staff at participating CKD programs deliver this program to interested patients at multi-care kidney clinic visits or during dialysis sessions.

CKD programs were encouraged to host workshops and social networking events such as educational movie nights. Such events give patients and their families the opportunity to share their stories and learn how social media platforms can be used to communicate their need for a kidney transplant.

The TAP (transplantambassadors.ca) is a new provincial patient-led support program with the aim of supporting patients and their families in learning more about kidney transplantation and living kidney donation. Transplant ambassadors, those with lived experience of living kidney donation or transplantation, can play an invaluable role in helping patients and their families consider and pursue transplantation as a treatment option. These ambassadors volunteer to spend time in multi-care kidney clinics and dialysis centers to connect and talk with interested patients and families about their experience with transplantation and/or living kidney donation. They can share their stories, provide both practical advice and emotional support, inspire family and friends to consider living kidney donation, help with navigation through the transplant process, connect patients with the educational resource hub described above, and motivate patients to complete essential steps on the pathway to receiving a transplant. As volunteers, they can often spend more time than healthcare providers discussing transplantation with patients and families. These transplant ambassadors wear bright green vests with the TAP logo and a large-print invitation to “Ask me about Kidney Transplantation.” These vests make it easy to identify ambassadors as kidney donors or recipients. Transplant ambassadors receive training in effective mentorship and communication, on maintaining patient confidentiality, and on delivering transplant education (while not providing medical advice).

A provincial coordinator assists with the implementation of the program, including inviting and onboarding living donors and recipients to serve as ambassadors. It was recommended that each CKD program have 2 local patient leads who also help train ambassadors and manage the TAP program locally. These patient volunteers are recruited from local patient and family advisory councils or by posters or mailed letters, or referral from healthcare professionals. Provincial oversight of TAP is provided by cofounder S McKenzie.

The aim of this component is to leverage existing administrative health data and facilitate data-sharing between CKD programs and transplant centers. Performance reports on key transplant metrics and patient transplant eligibility lists are regularly shared with CKD programs to foster a quality improvement culture. The ORN monitors these reports and provides support to help programs improve areas of weakness.

Quarterly program-level performance reports summarize several transplant-related metrics for a given program, including the number of kidney transplant referrals, the number of living donor candidates who contacted a transplant center for an intended recipient to begin their evaluation, the number of patients added to the transplant waitlist, the number of pre-emptive transplants performed (i.e. recipients who did not receive dialysis before their transplant), the number of living donor kidney transplants performed, the number of deceased donor kidney transplants performed, and the overall number of transplants performed. The reports also include process measures that relate to the implementation and delivery of the intervention, such as the number of patients who completed the Explore Transplant Ontario program. The local quality improvement teams can also request additional metrics for inclusion in their performance report. Sample reports were user-tested and reviewed by experts in audit and feedback before the trial started to refine the design. Input was sought from the CKD programs on the perceived relevance of the metrics, the ease of interpretation, and the perceived actionability of the reports. The reports are given to each CKD program’s local quality improvement team and reviewed in accountability meetings with the ORN. A sample report is provided in Supplemental Appendix 10 and a list of available metrics is provided in Supplemental Appendix 11.

Each program’s quality improvement team receives updated lists of patients who are potentially eligible for transplant referral (see Supplemental Appendix 12 for additional detail on types of patients who may be flagged in these lists); this report also includes a list of patients who have been in the transplant evaluation phase for more than 1 year. The teams are encouraged to share relevant lists with staff in their peritoneal dialysis programs, hemodialysis programs, and multi-care kidney clinics. The goal of these notifications is to encourage staff to help patients move through the evaluation process and to ensure patients do not get “lost in the system.” Programs can deem a patient currently ineligible or never eligible to receive a kidney transplant (patients in the latter category do not appear in future reports).