Supported Research

Lay Abstract

On average, African, Caribbean or Black (ACB) Canadians have high risk of kidney failure but have less than half the chance of receiving a live donor kidney transplant, which is the best treatment for kidney failure. Therefore, ACB patients with kidney failure get sicker, die sooner and have worse quality of life compared to White patients. However, we don`t know exactly how frequent kidney failure is in these communities. We also don`t know how people in the diverse ACB communities (Canadian or foreign-born, different cultural and religious background, etc.) think about kidney disease or about the different treatments for it (dialysis or kidney transplant). Purpose Our research will provide accurate information about the burden of kidney failure for ACB communities. It will also tell us what people in ACB communities think about the kidney care they may get if they need it. Method We will analyze data from more than 50,000 patients to describe the frequency of kidney failure, needing dialysis or transplant, and the risk of dying from kidney failure for ACB patients. We will also interview members of ACB communities with or without kidney failure, and ask them about their thoughts and fears about kidney failure. We will also ask them what they know and how they feel about dialysis or kidney transplant. We will also ask about what kind of treatment would they want, if they had kidney disease, and what information they would need to decide about the treatments. Objectives 1. Describe the frequency of kidney failure in ACB communities in Ontario. 2. Better understand thoughts and fears about kidney failure and its treatments within ACB communities. Anticipated Outcomes Our research will provide accurate information about the kidney failure in ACB communities. It will also tell us what people in ACB communities think about the kidney care they may get if they need it. This will inform the co-creation of kidney health related educational tools with ACB communities, to inform ACB communities about how serious kidney failure can be and what their options are. Patient Engagement We have been working with patient and community partners to plan our research. We will continue to discuss our progress and results with communities to make better sense of the results. Relevance to Patients/Community: Kidney disease and risk factors for kidney failure are likely common in ACB communities. This research will inform ACB communities about how serious kidney failure can be and what their options are. It will give them tools to make the best decisions on their treatment options. The tools will be culturally responsive and co-created with them. Conclusion This research will give us much needed information about the burden of kidney failure and the information need for ACB communities in Ontario. With the help of these results, we will work towards improving kidney care and kidney health for ACB communities.