Table of Contents · TIP: If immunization forms are required as part of the health clearance for...
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Transcript of Table of Contents · TIP: If immunization forms are required as part of the health clearance for...
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Table of Contents
Introduction ............................................................................................................................................... 3
Purpose .................................................................................................................................................... 3
Strategic Framework................................................................................................................................. 4
Quality Improvement ............................................................................................................................. 5
Data ...................................................................................................................................................... 7
Transplant Ambassadors ...................................................................................................................... 9
Education ............................................................................................................................................ 11
Conclusion .............................................................................................................................................. 15
Key Contacts .......................................................................................................................................... 15
Appendix A: Transplant Access and Quality Initiative Snapshot ............................................................. 17
Appendix B: Transplant Referral Eligible Patient Report ......................................................................... 19
Appendix C: How-to Guide ..................................................................................................................... 20
Appendix D: Screening Tool ................................................................................................................... 22
Appendix E: Tracking Form .................................................................................................................... 25
Appendix F: Instructions for use of the Dialysis vs. Kidney Transplant-Estimated Survival in Ontario
Clinical Decision Aid ............................................................................................................................... 28
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Introduction
Kidney transplantation as a treatment for patients with end-stage renal disease provides the best long-
term outcomes, in terms of both quality of life and life expectancy. Despite this, many people who are
eligible for, and would benefit from a kidney transplantation, are not able to receive one. While the
number of people in need of a transplant continues to rise, there are too few kidneys available from
deceased donors to meet the demand. To help the thousands of Canadians waiting for lifesaving and
life-improving kidney transplants, many provinces have stressed the importance of living kidney
donations.
The Ontario Renal Network (ORN) manages the planning and delivery of chronic kidney disease
services across Ontario. Trillium Gift of Life Network (TGLN) is responsible for the oversight of organ and
tissue donation and transplantation in Ontario. TGLN and ORN have established a joint partnership to
improve patients’ access to, and experiences with, kidney transplantation.
Under the leadership of Dr. Amit Garg, the Provincial Medical Lead for Kidney Transplantation and Living
Donation, TGLN and ORN have developed a joint strategy to enable a person-centred and integrated
transplant journey for patients. A key goal of the Access to Kidney Transplantation and Living Donation
strategy is to increase the number of living kidney donor transplants per year in Ontario by
approximately 20% by 2021. This translates into at least 100 more living kidney donor transplants.
Purpose
This guide is intended to be a resource for Quality Improvement (QI) Teams at Regional Renal Programs
participating in the ORN-TGLN Access to Kidney Transplantation and Living Donation strategy.
This guide will be updated periodically to ensure information is current.
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Strategic Framework
The framework guiding the ORN-TGLN’s Access to Kidney Transplantation and Living Donation strategy
(the strategy) is as follows:
In 2017, 13 of the 26 Regional Renal Programs in Ontario were randomly selected to participate in the
first two years of the strategy, from 2017-2019. Randomization is important because it ensures that the
group of programs participating in the strategy is comparable to the group not participating, which allows
for an evaluation of the effectiveness of the strategy at its completion. The process of randomization was
conducted through the Institute for Clinical Evaluative Sciences (ICES). Following the initial two years,
the remaining programs will begin implementing the strategy. .
After 2021, a comprehensive evaluation will be conducted and the strategy will be assessed for future
sustainability.
Each Regional Renal Program that participates in the strategy is required to:
Lead local QI initiatives to increase referrals and living kidney donor transplantation.
Leverage data to track progress and identify potential barriers related to transplant referral and
access to living kidney donor transplantation.
Incorporate the Transplant Ambassador Program (TAP), a grassroots patient-directed initiative
that provides peer support to patients with chronic kidney disease and their families. Through
sharing their stories, TAP Ambassadors encourage potential kidney transplant recipients and
living donors to explore transplantation as an option, when appropriate.
Utilize available educational tools and resources, and knowledge exchange forums to promote
awareness and knowledge of living donation among patients, families, and providers.
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Quality Improvement
The strategy is built such that Regional Renal Programs use a QI
approach to test, measure and implement changes that ultimately
improve access to kidney transplantation locally and across Ontario.
A QI approach will enable Regional Renal Programs to customize
solutions and initiatives to the local environment and context. It will also
enable Regional Renal Programs to leverage learnings from each other
by participating in a broader network, including TAP members and
members from local transplant programs.
The QI approach being used is an adaptation of the Institute for
Healthcare Improvement (IHI)’s Model for Improvement, which is a model
for achieving breakthrough improvement in healthcare, innovated in 1995. The Model for Improvement
illustrates four key elements of successful process improvement: specific and measurable aims,
measures of improvement that are tracked over time, key changes that will result in the desired
improvement, and a series of testing “cycles” during which teams learn how to apply key change ideas to
their own organizations.1
The QI Pillar lead for the strategy is Dr. Seychelle Yohanna, Nephrologist, St. Joseph’s Healthcare
Hamilton. Dr. Yohanna provides expertise on QI-related issues.
Actions for Regional Renal Programs
Convene a local QI Team made up of multidisciplinary staff and patient and family
stakeholders. Set up regular meetings for the QI Team to stay connected.
Decide on one or more aims to focus on (i.e., what would you like to change?).
Develop measures to determine whether or not changes have been achieved.
Identify change ideas that your QI Team will test.
Form a plan that outlines how changes will be accomplished and document the plan in your QI
Project Charter.
Test and monitor change ideas in a series of Plan, Do, Study, Act (PDSA) cycles.
Review progress, challenges and your QI Charter regularly with your QI Team.
Submit the names and emails of QI Team members to the ORN.
1The Breakthrough Series: IHI’s Collaborative Model for Achieving Breakthough Improvement. IHI
Innovation Series white paper. Boston: Institute for Healthcare Improvement; 2003. (Available on www.IHI.org).
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Submit your completed QI Project Charters to the ORN, and share any updates to Charters as
they arise.
Attend monthly phone calls to connect with QI Teams from all participating Regional Renal
Programs through sharing of updates, best practices, lessons learned and challenges.
Attend in-person meetings to connect with QI Teams from all participating Regional Renal
Programs and Transplant Centres to share learnings, hear about other Regional Renal
Programs’ approaches and to hear from experts in the field.
Connect with other QI Teams for one-to-one support.
Request a support call with the ORN if you are experiencing challenges and would like advice.
Review QI resources, including:
o QI Guide by Health Quality Ontario: http://www.hqontario.ca/portals/0/Documents/qi/qi-quality-improve-guide-2012-en.pdf
o Change Concepts and Ideas by Health Quality Ontario: http://www.hqontario.ca/Portals/0/Documents/qi/qi-change-concepts-and-ideas-primer-en.pdf
o Institute for Healthcare Improvement Resources: http://www.ihi.org/resources/Pages/default.aspx
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Data
As part of the strategy, Regional Renal Programs are provided with access to two quarterly data reports:
1. Transplant Access and Quality Initiative Snapshot, This report contains aggregate level information including trends in transplant referral and living donor transplant volumes. (For template, refer to Appendix A.)
2. Transplant Referral Eligible Patient Report, This report contains record level Personal Health Information (PHI) identifying patients who could potentially benefit from transplant education. (For template, refer to Appendix B.)
These reports combine:
1. Ontario Renal Reporting System (ORRS) data, 2. Ontario Health Insurance Plan (OHIP) data, and 3. TGLN’s TOTAL database.
They are designed to be used by the QI Teams to support the implementation of local QI initiatives.
The Data Pillar lead for the strategy is Dr. Amit Garg, Nephrologist, London Health Sciences Centre, with
support from Dior Sarr, Team Lead, Kidney Transplant, ORN.
Actions for Regional Renal Programs
Submit status updates on a quarterly basis as part of the “Quarterly Transplant Access and
Quality Initiative Snapshot” data submission.
Use the data reports to identify any internal bottlenecks in the transplant referral process.
Use the “Transplant Referral Eligible Patient Report” to facilitate discussions about patient eligibility during clinical rounds.
TIP: Tab "Due For Referral” lists patients who may be good candidates for transplant centre
referral (based on limited data available in provincial databases), however the transplant centre
has not received a referral package for them.
Use the “Transplant Referral Eligible Patient Report” to identify which patients would benefit from transplant/living donation education sessions.
Use the “Transplant Referral Eligible Patient Report” to identify common causes that make patients temporary ineligible for transplant.
TIP: Tab "Unresolved Precondition" lists patients who are 'waiting' for something to be
resolved to initiate/complete a referral package to the transplant centre.
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EXAMPLE: The report may identify multiple patients who must lose weight for a referral to take
place. Can you identify a common weight reduction strategy for these patients as a group and
offer positive reinforcement for patient progress?
Flag data errors for correction in ORRS.
TIP: The Transplant Referral Eligible Report is only as good as the underlying data in
ORRS. If you notice errors in the report, please flag them for correction in ORRS, so that the
errors are resolved in the next update of this report.
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Transplant Ambassadors
The Transplant Ambassador Program (TAP) connects individuals who are considering receiving a transplant, or donating a kidney, with a trained volunteer who has either received a transplant or donated a kidney. TAP is a grassroots program created and launched by two individuals with lived kidney transplant experience. It is innovative, entirely patient-led, and is a key component of the strategy. TAP is currently being coordinated by Candice Coghlan and Susan McKenzie, two inspiring individuals who have received kidney transplants and are passionate about sharing their stories.
Actions for Regional Renal Programs
QI team in partnership with TAP Coordinator to recruit a TAP Lead and Co-Lead.
QI team in partnership with TAP Coordinator to recruit TAP Ambassadors.
TIP: TAP posters and postcards are available to promote recruitment. It is recommended
that you post these materials in high visibility areas, such as in elevators, waiting rooms,
nephrologist offices or blood clinics.
TIP: A TAP recruitment letter is available to send to past donors and recipients to inform
them about the program. Reach out to front line staff, nephrologists, transplant coordinators,
and others who may know recipients or donors who could become involved.
To access these materials, please contact your TAP Coordinators, Candice Coghlan and
Susan McKenzie.
QI team to engage your hospital’s volunteer services department (or other relevant
department for volunteers).
TIP: Create a checklist tool that documents the TAP volunteer requirements, as this can be a helpful way of keeping track of multiple forms. TIP: If immunization forms are required as part of the health clearance for hospital volunteer onboarding, start with these before completing other requirements, as some volunteers may not meet these requirements.
QI team to ensure TAP Leads and Ambassadors have received appropriate training as per
your hospital’s policies and TAP Coordinator to provide TAP program orientation.
QI team to provide your TAP Leads with clinic schedules so that they can create a shift
schedule for Ambassadors. This will provide TAP Ambassadors with meaningful opportunities
to connect with patients and families.
TIP: Provide TAP Leads with clinic schedules as far in advance as possible (ideally a couple of months). Include times for multi-care kidney clinics, in-centre dialysis, peritoneal and home hemodialysis clinics, and dialysis training dates.
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TIP: Identify patient information sessions that TAP Leads could attend (such as dietary, travel or insurance information sessions). This will enable TAP Leads to ensure that Ambassadors are available to attend these sessions.
QI team to invite your TAP Leads to all of your QI team meetings. It is important to have your
TAP Leads feel part of the team at your hospital and to be able to bring back the valuable
feedback they are getting from potential recipients and donors.
Contact the TAP Coordinators, Candice Coghlan and Susan McKenzie, if you need any help
getting your TAP started.
TIP: Contact Candice and Susan if you would like them to attend a transplant education event at your hospital. TIP: Contact Candice and Susan if you need additional TAP promotional materials, such as posters, postcards, vests, lanyards, or if you would like presentations for Ambassadors, staff, families and patients.
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Education
This section will begin with an overview of tools and resources currently available to Regional Renal
Programs. Following the overview, there are actions and tips within the following three sections:
1. Patient and Family Level
o Patient and family level education increases awareness and knowledge related to kidney
transplantation and living donation, enabling patients to make an informed choice about
their preferred treatment option.
2. Staff Level
o Staff level education improves staff comfort and confidence in having conversations with
patients and families around kidney transplantation and living donation.
3. Organization Level
o System level structures can be put in place to support improved patient and staff
education related to kidney transplantation and living donation.
The Education Pillar leads for the strategy are Dr. Istvan Mucsi, Nephrologist, University Health Network
and Dmitri Belenko, Registered Nurse, University Health Network. They are available to provide support
around education, including individualized teleconferences and in-person site visits.
Educational Tools and Resources
Explore Transplant Ontario
www.etontario.org
Explore Transplant Ontario (ETO) is an optional educational tool available for use at the discretion of
each individual Regional Renal Program. All 13 participating Regional Renal Programs received ETO
packages, in both USB and CD formats. Additionally, ETO can be accessed online at
www.etontario.org.
Resources available to Regional Renal Programs to support the implementation of ETO include:
ETO How-to Guide (Appendix C),
ETO Screening Tool (Appendix D),
ETO Tracking Form (Appendix E),
The Volunteer Transplant Education Support Navigator (VOTE-SUN) program is available for
programs that express interest. These volunteers, provided through Dr. Mucsi’s Kidney Health
Education and Research Group, can be integrated into nephrology units and assist with the
process of delivering and tracking ETO packages,
Support calls, and
Site visits.
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ORN Patients and Donors Resource Hub
www.renalnetwork.on.ca/TransplantPatientHub
The ORN Patients and Donors Resource Hub is intended to help patients and donors to:
Learn more about kidney transplantation and living donation,
Understand the process for receiving a kidney from a living donor, and
Make informed decisions related to kidney transplantation and living donation.
ORN Provider Resource Hub
www.renalnetwork.on.ca/TransplantProviderHub
The ORN Provider Resource Hub is intended to help providers, healthcare practitioners and hospital volunteers support effective decision-making throughout the kidney transplantation and living donation process.
The Dialysis vs. Kidney Transplant- Estimated Survival in Ontario Clinical Decision Aid
www.dialysisvstransplant.ca
This is a tool for doctors, social workers, nurses, and/or patient educators to help chronic
dialysis patients, who are eligible transplant candidates, make more educated treatment
decisions.
The tool provides estimates for a patient's 3-year risk of survival and death with different
treatment options (dialysis versus living and deceased donor kidney transplantation).
It is available as both a website and for download as an iOS application.
Important: Before using this tool, please refer to Appendix F for further instructions.
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Patient and Family Education
Actions for Regional Renal Programs
Introduce the option of kidney transplantation with all chronic kidney disease (CKD) patients
who may be eligible for transplantation.
TIP: Use the “Transplant Referral Eligible Patient Report” to identify patients who could
benefit from transplant education. Share education materials and resources with these
individuals.
Talk to patients about living donation and ask about potential donors. Encourage patients
to learn about living donation, to share materials with family and friends, and to have
discussions with potential donors.
Offer education and support around transplant to patients who are currently on the
deceased waiting list. These patients should receive focused education about living
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donation, health maintenance while waitlisted, and required tests to maintain their position on
the waitlist.
TIP: Providing regular updates about wait-listing status or outstanding requirements may
alleviate patient uncertainty and reduce delays.
Encourage family and friends to participate in the transplant education process to support
decision-making and to help share information about living donation across social networks.
If Regional Renal Programs are using ETO, distribute ETO using a multiple encounter
model to maximize effectiveness.
TIP: To prevent information overwhelm, consider splitting teaching into several visits. Be
mindful of literacy and language barriers, as well as patients at varying levels of readiness to
consider transplant.
If Regional Renal Programs are using ETO, offer to view the first ETO video with the
patient and hold a discussion afterwards. This will enable a thoughtful discussion about the
patient’s readiness to consider transplant, learning needs, and plan for next steps.
Host group viewing sessions for patients and families to watch and discuss ETO videos,
with staff support to answer patient questions.
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Staff Education
Actions for Regional Renal Programs
Hold in-services about the ORN and TGLN Provincial Strategy, kidney transplantation and
living donation and make staff aware of existing education resources and tools.
If Regional Renal Programs are using ETO, encourage frontline staff to review ETO
packages and use the online access portal.
Facilitate access to the upcoming Transplant Core Curriculum Webinar Series - a
comprehensive curriculum about essential topics in transplant aimed at all frontline
nephrology staff. Details about date and content will be shared prior to each webinar.
Create frontline “Transplant Champions” to promote transplant education and discussion
within your Regional Renal Program.
Request a site visit to provide individualized support to improve approaches to transplant
education. Programs may request teleconferences or in-person visits with Education Pillar
leaders (Dr. Mucsi and Dmitri Belenko) or ETO creator (Dr. Amy Waterman).
Share information about listing criteria/process.
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o Informing patients and staff about the listing process may expedite the wait-listing
process and ensures fair consideration of all patients for transplant.
o Patient-facing resources outlining the listing process are available at the Patients and
Donor Resource Hub. Staff-facing resources are available at the Provider Resource
Hub. TGLN’s Ontario’s Referral and Listing Criteria for Adult Kidney Transplantation
document could also be a helpful resource for staff education.
Incorporate transplant education into new and ongoing staff education processes.
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Organization Education
Actions for Regional Renal Programs
Incorporate transplant education into modality education that takes place during Multi-Care
Kidney Clinic visits.
Consider allocating staff hours for transplant education and championing, if possible.
Display transplant related information and promotional materials in clinics and dialysis
units.
For Regional Renal Programs using ETO, consider implementing the VOTE-SUN (Volunteer
Transplant Education Support Navigator) program.
For Regional Renal Programs using ETO, consider integrating ETO tracking and screening
into your Electronic Medical Records (EMR) system to ensure the complete tracking of data,
such as the number of ETO packages distributed, and to enable streamlined reporting.
Liaise with nephrologists to optimize the local system for identifying transplant-eligible
patients. Refer to the “Transplant Referral Eligible Patient Report”.
TIP: Regional Renal Programs should review their current process for initiating transplant
workup, and identify steps to streamline the process while including all potentially eligible
patients. Nephrologists are powerful stakeholders who should be engaged in this.
Leverage TAP to enable greater dissemination of transplant education and awareness.
Collaborate with members of your local transplant centre to strengthen relationships and
direct communication.
TIP: A member of your transplant centre should be an integral part of your QI team. They can
act as a direct line of communication for any questions or clarifications your staff may have
related to transplant eligibility, evaluation, waitlist, and transplant process.
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Join optional Education Pillar Support Calls to discuss progress, barriers and to receive
feedback on your local education QI process.
Recognize that education visits with patients are eligible for funding.
o Details around education clinic visit funding can be found in the 2017/18 Chronic
Kidney Disease Amalgamated Funding Guide, section 1.2.
o One-on-one education sessions with any level nurse working in an educator capacity
are eligible for funding. This does not include the nurse providing dialysis treatment.
o Group education sessions provided by more than one healthcare educator to a group
of patients are eligible for funding.
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Conclusion
Implementing a QI initiative can take time and effort; however, the outcomes can be very rewarding.
Testing and adjusting will be key as you continue to improve your transplant processes and work towards
enhancing access to kidney transplantation while also improving the experience of patients going
through this journey.
The actions and tips in this guide related to the strategy’s four pillars: QI, Data, Transplant Ambassadors
and Education are intended to support you as we work towards achieving the goal of increasing living
donor kidney transplants per year in Ontario by at least 20% by 2021.
If you have resources that you think should be added to this guide or any questions, please contact
Janice Kelly, Senior Analyst, Kidney Transplant at 416-971-9800 ext. 2460 or
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Key Contacts
Name Title Phone Email
Quality Improvement
Dr. Amit Garg ORN-TGLN Provincial
Medical Lead, Access to
Kidney Transplantation and
Living Donation,
Nephrologist/Director of
Living Donor Program,
London Health Sciences
Centre
519-685-8500
ext. 77867
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Dr. Seychelle
Yohanna
Nephrologist, St. Joseph’s
Healthcare Hamilton
905-522-1155
ext. 33323
Data
Dr. Amit Garg Nephrologist, London
Health Sciences Centre
519-685-8500
ext. 77867
Dior Sarr
Team Lead, Kidney
Transplant, ORN
416-971-9800
ext. 2508
Transplant Ambassadors
Candice
Coghlan
Program Coordinator, TAP
519-222-0241 or
1-833-274-3740
candice.coghlan@transplantamba
ssadors.ca
Susan
McKenzie
Program Coordinator, TAP
226-921-5642 or
1-833-274-3740
Education
Dmitri Belenko Registered Nurse,
University Health Network
Dr. Istvan
Mucsi
Transplant Nephrologist,
University Health Network
647-477-8539
ORN-TGLN Kidney Transplant Team Contacts
Name Title Phone Email
Jeanette Chu Project Manager – Clinical
Transplant Systems
416-619-2362 [email protected]
Christina
D’Antonio
Group Manager, Clinical
Programs
416-971-9800
ext. 3264
ca
Janice Kelly Senior Analyst, Kidney
Transplant
416-971-9800
ext. 2460
Irina McLaren Specialist, Kidney
Transplant
416-971-9800
ext. 2853
Dior Sarr
Team Lead, Kidney
Transplant
416-971-9800
ext. 2508
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Appendix A: Transplant Access and Quality Initiative Snapshot
The Transplant Access and Quality Initiative Snapshot Report includes information on both process
measures and outcomes:
Process Measures
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Outcomes
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Appendix B: Transplant Referral Eligible Patient Report
The Transplant Referral Eligible Patient Report has three tabs that list:
1) Patients Due for Referral
2) Patients with Unresolved Preconditions
3) Patients who are Due for Transplant Update
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Appendix C: How-to Guide
Guide for delivering transplant education using the ETO package
Transplant education has been identified as key component of the ORN – TLGN Access to Kidney Transplantation & Living Donation strategy. Providing easy-to-digest and informative transplant education will be essential to achieve our goal of increasing living kidney donation rates and supporting patients with end-stage renal disease. The Explore Transplant Ontario (ETO) packages are now available in all participating Regional Renal Programs. These are comprehensive resources to help patients and their families consider transplantation as a treatment option, and to support their decision to pursue transplant and living donation. Anyone can deliver transplant education with the ETO package, in a time-efficient matter. This guide will support you in using the ETO package with patients.
Initial education visit
Any patient who is eligible for transplant or expresses interest in learning more about it should be considered for receiving the ETO package.
Use the Education Screening Tool to identify patients who are optimal candidates for receiving transplant education, based on their expressed readiness to pursue transplantation.
Consider using the Educator Guide, available from your QI team or from the www.etontario.org website, under resources for healthcare professionals. This document outlines questions you can ask and provides a format for the educational encounters with patients.
Suggested actions for the first education encounter:
1. Explain your intent to share education about transplantation and gauge the patient's readiness to engage with the content. Complete the screening tool if available.
2. Introduce the ETO package to the patient. Explain that the package is intended to help them consider transplantation as an option, and the materials will support their process of getting waitlisted and deciding whether living or deceased transplantation is the right option for them.
3. Describe the package contents - feel free to open the package and review the components at the
bedside. Each package should contain:
Written brochures and pamphlets that provide factual, accessible information about transplant and living kidney donation. There should be 6 brochures in total.
A USB or CD containing the ETO videos. These are a series of 20-minute videos which feature patients, families and kidney donors, who share their experience with kidney transplant.
4. Encourage the patient to review these materials, sharing them with families and friends.
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5. Inform the patient that these materials are available online, at www.etontario.org. Each patient will
be able to use the login information specific to your program. Ask your Quality Improvement team if you are not sure what these login details are.
6. Advise the patient to note down any questions they have while reviewing the brochure, to share with their kidney health team.
7. Make sure to record the initial encounter with the tracking tool provided by your QI team.
Follow-up visits
It is highly recommended to conduct at least one follow-up visit with each patient that receives the ETO package. This will help assess their experience, answer any questions they have, and ensure that patients who are ready to pursue transplant begin the process as early as possible.
Consider referring to the Educator Guide for questions to ask to track the patient's progress.
Suggested actions for follow-up visits:
1. Ask the patient whether they have reviewed the written brochures and watched the videos within the package. Encourage patients to review the materials if they have not, and suggest sharing the materials with people they trust.
2. Ask the patient if they have any questions or concerns that came up while reviewing the package. Refer them to the appropriate staff member to answer these, if needed.
3. Determine whether the patient is ready to pursue transplant. For example, ask about wait listing
status, outstanding tests, etc. Encourage all patients to consider living donation and asking potential donors to be tested. Support this process as necessary.
4. Complete the follow-up components of the ETO Delivery & Tracking Form, and store in patient's
chart.
Where to find support
If you have any questions about transplant education, ask your regional Quality Improvement Team Lead(s). Visit www.etontario.org to find resources such as the Educator Guide, and the brochure materials. Ask your Quality Improvement Team Lead if you do not have the login credentials. Additionally, you can email [email protected] or Dmitri Belenko at [email protected] with any direct questions about Explore Transplant and transplant education.
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Appendix D: Screening Tool
Patient Screening Tool for Delivering Transplant Education
Please see guidelines for use at the bottom of this document
Demographic information
Identification:
Patient Name: ______________________________________ MRN:___________________
Date of first encounter: ___/____/______ Screening form completed: ___/____/______
Patient’s modality type
□ In-Centre hemodialysis □ Home hemodialysis □ Peritoneal dialysis □ MCKC □ Transition unit
Transplantation Status
1. Have you been informed of transplant as a treatment choice or discussed transplant with your
healthcare team?
□ Yes □ No □ Don’t Know □ Prefer not to answer
Comment:______________________
2. Have you started transplant evaluation/workup?
□ Yes □ No □ Don’t Know □ Prefer not to answer
Comment:______________________
3. Have you been assessed for a transplant at a transplant Centre?
□ Yes □ No □ Don’t Know □ Prefer not to answer
Comment:______________________
4. Are you on the waiting list?
□ Yes □ No □ Don’t Know □ Prefer not to answer
Comment:______________________
5. Have you been told that you cannot be transplanted – if you are not a transplant candidate?
□ Yes □ No □ Don’t Know □ Prefer not to answer Comment:___________________
Attitudes towards transplant
1. Which treatment do you think would be the best for you long term:
□ Dialysis □ Deceased donor kidney transplant □ Living donor kidney transplant
□ Don’t know □ Prefer not to answer Comment:______________________
2. Do you want to receive a kidney transplant?
□ Yes □ No □ Don’t Know □ Prefer not to answer
Comment:______________________
Do you want a kidney from a living donor?
□ Yes □ No □ Don’t Know □ Prefer not to answer
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Comment: _____________________
Readiness towards transplant
1. How ready are you to pursue deceased kidney transplantation as a treatment option?
□ I am not considering getting on the deceased transplant waiting list
□ I am considering pursuing a deceased kidney transplant within the next 6 months
□ I am planning to start the process of getting a deceased kidney transplant within the
next month
□ I am currently pursuing kidney transplantation (getting onto the waitlist)
□ I have finished the process of waitlisting and am waiting for a kidney transplant
□ Prefer not to answer
Comment:________________________________________________
2. How ready are you to pursue living kidney transplantation as a treatment option?
□ I am not considering pursuing living kidney transplantation
□ I am considering pursuing a living kidney transplant within the next 6 months
□ I am planning to start the process of getting a living kidney transplant within the next
month
□ I am currently pursuing living kidney transplantation (approaching donors, etc.)
□ I have found a matching living donor and am waiting to receive my kidney transplant
□ Prefer not to answer
Comment:________________________________________________
3. Do you have a potential living donor who is undergoing work-up?
□ Yes □ No □ Don’t Know □ Prefer not to answer
Comment:______________________
4. If a kidney from a deceased donor became available for you today, would you accept it?
□ Yes □ No □ Don’t Know □ Prefer not to answer
Comment:______________________
If someone close to you offered you one of their kidneys today, would you accept it?
□ Yes □ No □ Don’t Know □ Prefer not to answer Comment:
_____________________
Guidelines for use:
This tool is meant to help programs to identify patients who are the best candidates for receiving
transplant education and support for getting on the waitlist or identifying a living donor candidate.
Program may use other tools or criteria to identify patients for transplant education at their discretion.
We suggest that this tool is used before administering any educational materials such as ETO, to
measure the patient’s “baseline” transplant status and readiness.
The screening tool can be repeated during or after completing the ETO program, to monitor and
record changes in transplant status and readiness towards kidney transplantation.
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Suggestions for patient selection:
We suggest that all patients who are eligible for transplant (i.e. not identified as ineligible by
Nephrologist or Transplant Center) are approached to complete this screening tool and be offered
education about transplant
Responses to the readiness questions below can be used as a means to identify patients most likely
to benefit from educational interventions.
Patients’ responses to questions # 1 & 2 in the “Readiness towards transplant” section provide an
indication of their readiness to pursue transplant.
Patients who indicate that they are “Not considering” pursuing living or deceased transplant may
require more time and more in depth extensive counselling to motivate them for transplant
Patients who indicate that they are “Considering”, “Planning” or “Currently pursuing” living or
deceased transplant often benefit from being provided educational materials such as ETO
Patients who indicate that they are “Finished” their work-up process or “Have found” a living
donor may still benefit from receiving educational materials such as ETO, but they may require
ongoing support tailored to maintaining their health while waiting for a transplant. Consider using
the additional educational resources available on the ORN education portal.
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Appendix E: Tracking Form
Tracking Form for Patients Receiving ETO and Transplant Education
Please see instructions for use at the bottom of this document
Patient Name: ________________________ MRN: ___________________________
Date and Name/Title of person completing the tracking form:
Date: ___/___/___ Name: __________________________________Title: _____________________
Measures to track Explore Transplant Ontario package use
Explore Transplant Ontario package provided to patient?
□ Yes □ Declined Comment: _____________________________________ Date: ___/___/___
Please provide details about the additional meetings to discuss ETO and transplant, where applicable.
Use the ETO Educator Guide, available online, to guide your discussions with patients.
□ Received “Meeting #1” discussion Date: ___/___/___ Completed by: ____________________
Comment:__________________________________________________________________________
___________________________________________________________________________________
□ Received “Meeting #2” discussion Date: ___/___/___ Completed by:
____________________
Comment:__________________________________________________________________________
___________________________________________________________________________________
□ Received “Meeting #3” discussion Date: ___/___/___ Completed by:
____________________
Comment:__________________________________________________________________________
___________________________________________________________________________________
□ Received “Meeting #4” discussion Date: ___/___/___ Completed by:
____________________
Comment:__________________________________________________________________________
___________________________________________________________________________________
Has patient watched all 4 videos of Explore Transplant Ontario in their entirety, and had detailed
discussion(s) about the content of the videos with a person trained in the delivery of Explore Transplant
Ontario (a CKD program health professional, transplant ambassador or a designated transplant
education support navigator)?
□ Yes □ No
Comment:______________________________________________________________
___________________________________________________________________________________
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Measures to track General Transplant Education
Has patient received 30 minutes or more of a dedicated transplant education activity provided by a
healthcare provider or a designated transplant educational volunteer prior to any referral by the CKD to a
transplant centre for evaluation"?
□ Yes □ No □ In the process
Comment: __________________________________________________________________________
General use guidelines
This tool is intended to be completed sequentially, recording the initial administration of the ETO
package and the subsequent follow-up visits. It is recommended to keep this tracking tool in the
patient’s chart or records, to allow persons doing follow-up visits to fill in the sheet.
We suggest the use of the “Patient Screening Tool for Delivering Transplant Education” to help
identify patients most likely to benefit from transplant education.
Follow-up visits should ideally follow the structure and questions outlined in the “Educator Guide” for
ETO, created by Dr. Waterman and available online at etontario.org
Instructions for tracking Explore Transplant Ontario Package Use
“Explore Transplant Ontario package provided to patient?”
Record whether and when the package was provided to the patient. Where applicable, state the
reason for package not being provided.
Provide online access information for the ETO materials at etontario.org along with the package
“Received Meeting #__ Discussion?”
Record whether the patient was seen for follow-up visits after the package was administered.
Use the “Educator Guide” for guidance on conducting the follow-up visits
Under comments, record patient any patient feedback or statements about their transplant
readiness or actions taken to get onto the waiting list
“Has the patient watched all 4 videos of Explore Transplant Ontario in their entirety, and …”
The answer to this question is recorded based on self-report of the patient
This question records package use as per the format required for the Educational Measures
Snapshot that centers will be recording.
Encourage patients to watch all 4 videos - this could be done with family and friends, or in the
dialysis unit during treatment.
Instructions for tracking General Transplant Education
“Has the patient received 30 minutes or more of a dedicated transplant education activity…”
This refers to unique patients. It does not consider if educational activity was provided to families
and friends.
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Only count the first time a patient receives education to inform their decision to receive a kidney
transplant. If the patient received 2-3 shorter sessions that amount to a total of 30 min, the
question can be answered as “yes”.
This question counts education provided within the renal program (which may include situations
where members of the transplant center come to speak to patients). It does not count education
provided after a patient has been referred to a transplant center.
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Appendix F: Instructions for use of the Dialysis vs. Kidney
Transplant-Estimated Survival in Ontario Clinical Decision Aid
Please review this document prior to using the Dialysis vs. Kidney Transplant-Estimated Survival in
Ontario website or iOS application.
The Dialysis vs. Kidney Transplant-Estimated Survival in Ontario clinical decision aid is a tool for doctors,
social workers, nurses, and/or patient educators to use with chronic dialysis patients and their families to
help dialysis patients make more educated treatment decisions. The tool is available as both a website
and for download as an iOS application. The tool provides estimates for a patient’s 3-year risk of survival
and death with different treatment options (dialysis versus living and deceased donor kidney
transplantation). The 3-year predicted survival risks are based on patients similar with respect to age,
race, and comorbidities as the patient whose information is entered into the website/iOS application.
This tool should NOT be used to identify patients who may not be good transplant candidates.
This tool should only be used with patients who are reasonable candidates for a kidney transplant.
This tool has only been externally validated in the Ontario dialysis population and cannot be used to
estimate risk in the pre-dialysis population. This tool should not be given to patients to use on their
own time as one of the purposes of the tool is to promote discussion between the patient and provider
about treatment options.
It is possible that chronic dialysis patients could become concerned when they see their predicted 3-year
mortality risk. Therefore, this tool should only be used if the care provider has adequate time to discuss
the estimates provided and address patient concerns. It is also important to emphasize to the patient that
these are estimates only. Further, it should be communicated with the patient that estimates provided will
not affect the clinician’s treatment decisions, including their decision to refer for transplant.
Prior to using the website or iOS application with patients please review the “Healthcare Providers” tab
on the Dialysis vs. Kidney Transplant-Estimated Survival in Ontario website. If you have any questions
regarding the use of the tool please contact Dr. Amit Garg ([email protected]) prior to using.
