Patient Lead: Carol Connolly
Patient Group: Patients who have experience with kidney disease and heart disease
Heart disease is very common in people with chronic kidney disease (CKD), and is a major cause of hospitalization, reduced quality of life, and shortened survival. When people with CKD develop heart problems they are much less likely to receive tests and procedures for their heart than people without CKD. We will develop tools that can help doctors share personalized information on the benefits versus risks of having a heart procedure, and help patients better communicate their own values and preferences to their doctor. We are working directly with patients and health care providers to understand the experiences and challenges of decision-making in these situations, and collecting information that will be used to develop strategies to help patients and health care provider make better decisions.
Our project will be completed in three phases, which involve patients and their health care providers throughout the process. Phase 1 will identify the information that is most important and the value that patients and doctors place on this knowledge when making these decisions. In Phase 2, patients, health care providers, and researchers will work together to combine this information to develop a ‘decision-aid’, which is an information and communication tool that will help patients and doctors make decisions together. In Phase 3, we will test how well this tool works by using it with patients and doctors and examining how it affects their experience and decisions. If we are successful, we believe we can help patients and doctors be more confident in their decision-making, and help them arrive at the treatment option that is most appropriate for each individual.