Supported Research

Lay Abstract

Promoting shared decision-making about kidney failure treatment in people with advanced kidney disease People with advanced chronic kidney disease, typically having less than 15% of normal kidney function, have reduced quality of life and a higher risk of death. As a result, they require more healthcare resources than people without kidney disease or with less severe kidney disease do. As their kidneys fail, people face many important and challenging decisions with guidance from their providers and loved ones. The first is whether to pursue dialysis or a kidney transplant, or whether to choose conservative management where symptoms are managed without dialysis or transplantation. Conservative management is typically chosen by individuals who have a higher risk of dying, are not transplant candidates, and are unlikely to live longer or improve their quality of life with dialysis. People with advanced kidney disease need accurate information on their risk of dying so that they and their families can make informed choices about their treatment options. These discussions should integrate people’s preferences and treatment goals. However, no tools estimating their risk of dying exist. Some people with advanced kidney disease will never need dialysis during their lifetime or will need it for a very short time. It is difficult to determine a person’s risk of dying, because many factors, such as age and disease course, influence this risk. No two people’s kidney disease course is the same – our goal for this project is to understand people’s kidney disease journey and treatments and involve important people including patients and their families in the design process for an accurate prediction tool using cutting-edge methods. We will use healthcare data of Alberta residents diagnosed with advanced kidney disease and kidney failure to understand their kidney disease course and treatments. We will hold two meetings that engage patients and their caregivers, clinicians, and health systems leaders from Alberta to discuss important features of a tool to estimate the risk of death among people with advanced kidney disease that is relevant and usable. Based on feedback from the meetings and the understanding of patients’ disease course, we will create a tool that predicts the risk of death in people who develop advanced kidney disease (i.e., 10%-15% of normal kidney function) and can be used again when they return to clinic for follow-up. This is called dynamic risk prediction (i.e., it accounts for how one’s risk might change over time). We will create another tool to predict the dynamic risk of death in people who develop kidney failure (i.e., treated with dialysis or less than 10% of normal kidney function). We will test how accurately these tools predict risk in other patient populations (in Ottawa and Europe). We have a strong research team with expertise in this field and have partnered with patients, healthcare providers, and policymakers to help integrate our risk prediction tool into practice. Our research and risk prediction tool will inform discussions and decisions about treatment for kidney failure in real-world practice.