Supported Research

Lay Abstract

Background: Kidney disease affects 1 in 10 Canadians. Since it often starts slowly and develops over many years without any symptoms, the disease may not be detected until kidney function is quite low. Late referrals for specialized kidney care are a major problem. Many people who need kidney care are not receiving treatments that could slow down their kidney disease.
 
Purpose: We designed a new KidneyCare Outreach program that will identify more people who have undertreated kidney disease so they can be linked to a kidney specialist. Our 2-year pilot trial will make sure our new program is practical. It will help in the design of a larger trial to prove that our program versus usual care reduces kidney failure.
 
Method: As doctors, we commonly diagnose kidney disease using blood tests to estimate a person’s level of kidney function and urine tests to look for protein. As part of Canada’s publicly funded health system, we keep data on all hospitalizations, doctor’s visits and lab tests done in Ontario. We will use this data to find people whose risk of kidney failure in the next two years is 1 in 4 or more but are not seeing a kidney doctor. We will start by inviting 100 eligible people to participate in the KidneyCare Outreach program. Those who agree to participate will have new lab tests, talk to a kidney doctor using telemedicine, and be connected to kidney care close to home. Another 100 people will be followed as they get their usual care. This is the first time we will be using existing, province-wide data to contact and offer care to individuals at the highest risk. Privacy laws in Ontario permit us to use the data in this way and we have Research Ethics Board approval to move forward.
 
Anticipated Outcomes: This pilot phase will allow us to confirm if our way of contacting and enrolling eligible people is practical and make improvements. We will connect a small set of those at greatest risk to the kidney care they need but may not have gotten. This project is an important way to ensure these people don’t continue to ‘fall through the cracks’ in our complex health system.
 
Patient Engagement: We included kidney patients early in the design of our program. Our patient partners believe so strongly in the potential impact of this work that we formed a formal patient partner working group to make sure patient input can be considered through all stages of development. Our patient partners have contributed to the approach to how people will be contacted, they improved the study invitation package that will be seen by those we identify, and they feature as authors on a publication looking and patient and public perceptions toward this new way of using existing health system data.
 
Relevance to Patients/Community: By identifying those at highest risk of kidney failure in our community, we can help ensure they receive the best kidney care in a timely way. This will be particularly important for people who may be less able to access kidney care because of factors outside their control, such as where they live, culture, language, gender, etc. Timely contact with a kidney specialist to provide the care they need can prevent or delay kidney failure. Lives can be saved when specialists are able to understand and treat the underlying cause of CKD (such as diabetes or high blood pressure), educate people on lifestyle choices that protect their kidneys (such as diet and exercise) and ensure they have access to the most effective kidney medications. All these efforts can change the path of a patient’s kidney disease so that they can delay or avoid the need for dialysis for years or even a lifetime.
 
Conclusion: Our KidneyCare Outreach clinical trial will provide proof that existing health system data can be used in this innovative way. It will lay the groundwork for a larger trial to expand our outreach and help more people with CKD. We believe this exciting program has the potential to improve and save the lives of kidney patients who have not received timely or effective care for their life-threatening illness