May 13, 2024

Patient partners, researchers, and nephrologists from coast to coast gathered in Montreal this month for the 2024 Can-SOLVE CKD Annual Meeting. It was a chance to reconnect and share updates from across the network. Through three panel sessions, project teams gave overviews of their implementation efforts to date, discussing challenges, successes, and next steps.

Defining Best Treatment Options

The first project panel of the day involved the PRO-Kid, Mind the Gap and Living Donation project teams.
Dr. Mina Matsuda-Abedini and her colleagues started by giving an update on behalf of the PRO-Kid team, noting they have validated additional versions of their tools – in French and for younger age groups – to assess symptoms of children living with kidney disease. As they work to implement their assessment tools at several sites across Canada, they are finding that the tool is most effective when used together by care providers and patients, rather than having patients complete the assessment on their own. The team will be conducting additional interviews with users throughout the implementation phase, to better understand barriers and facilitators to adoption. Their next steps include not just identifying symptoms in children but outlining how providers can address those symptoms.

The second project team, Mind the Gap, is focused on addressing the mental health needs of people affected by kidney disease. The team announced that they have created a nation-wide inventory of mental health services freely available online for anyone to access, unveiling a QR code that takes people directly to the site.

Lastly, the Living Donation team sent a recap video, which will be shared shortly!

Indigenous Health

The Kidney Check project team kicked of the Indigenous Health panel session by noting challenges presented by the COVID-19 pandemic and data access issues. However, the various provincial Kidney Check programs recently met in person to learn from one another and share tips for success. Cathy Woods, the patient partner lead for the project, emphasized the importance of two-eyed seeing and adopting a trauma-informed approach to their work.

Rachel Girimonte then gave an update on the SafetyNet project, an initiative to send out referrals to people in Manitoba at high risk of kidney disease and invite them for screening. “It’s modelled after a successful cancer care surveillance program,” she explained, pointing to how women who turn 50 are sent letters in the mail suggesting a routine mammogram screening.
During the panel, Girimonte and audience members discussed challenges related to data privacy but noted the project has received ethics approval and is ready to start recruiting participants, who will be randomized into receiving the intervention or standard of care. The team hopes to present preliminary data from the trial at next year’s meeting.

Next, the iCARE project shared that their eGFR equation for evaluating kidney health in youth with type 2 diabetes and high Body Mass Index has been validated and found to be very accurate. Dr. Allison Dart discussed results from a survey of endocrinologists across Canadad to see how they are screening and assessing children.

“Importantly, we learned that only a few are actually even looking at eGFR. It’s not something they are doing in practice,” she says, noting that surveys suggest endocrinologists don’t know how to interpret the equation. This has prompted the project team to plan future focus groups on how to implement their eGFR equation into clinics and to create tools to support its use by endocrinologists.

Dart then transitioned to focus on the important topic of data sovereignty when working with Indigenous communities through the iCARE project and broader DREAM research team. This topic is discussed in more detail through a piece in the Cultural Competency Connections column that will be shared soon.

Innovative Technology

In the final panel session, the Self-Management project team highlighted their freely available e-health tool, My Kidneys My Health, which provides patients with the information they need to manage their health on a daily basis. Patient partner Dwight Sparkes talked about how, when he was first told he had kidney disease, his doctor sent him home with very little information on how to manage his newly diagnosed disease.

“Patients are not born with this information. It’s something you need to seek out. And My Kidneys My Health really fills that gap,” Sparkes explained.

While the interactive tool is already freely available online, panel members noted that they are interested in expanding upon the platform to include more culturally relevant information (e.g., kidney-friendly Indigenous foods) and sexual health content, which patients have expressed as important additions. The team says they have also concluded a peer-support project and aim to embed those learnings into the tool.

Next, STOP Med-HD team members noted that their new tool to reduce the pill burden of hemodialysis patients has already been implemented at Toronto General Hospital and is in the midst of rollout in Halifax. Soon, the project is expected to reach sites in Calgary and Vancouver – officially achieving a coast-to-coast rollout. The top three medications the tool is being used to deprescribe include: proton pump inhibitors, diuretics, and urate-lowering agents. The team shared data showing how the tool could effectively lower the pill burden of hemodialysis patients, and noted that surveys of patients suggest the tool is viewed positively and works best when completed in partnership with care providers.

The APPROACH team then shared their success in implementing their a decision-aid to reduce the risk of kidney injury due to cardiovascular testing. The team showed a video of patient partners sharing their experiences using the tool and explaining why it is important to them. To date, the decision-aid has been implemented at sites in Calgary and Edmonton. The team will assess which aspects are key to implementing the tool at those sites before expanding its use to other sites in Canada. This may come in the form of educational materials, on-site support, or other resources.

“Overall, it was amazing to hear everyone’s updates and see the progress that’s being made throughout the network,” says Dr. Adeera Levin. “It’s clear we are making a significant impact within the kidney community, and I look forward to continuing and expanding upon our great work.”