Project Leads: Brenda Hemmelgarn, Heather Beanlands, Sharon Straus
Patient Lead: Gwen Herrington
Patient Group: Patients and caregivers living with CKD

Patients with chronic kidney disease need to balance their complex medical condition with the demands of daily life while maintaining emotional well-being. This research project aims to understand how we can empower patients to self-manage their chronic kidney disease to improve disease progression and overall patient experience and well-being.

To date, we have reviewed and summarized self-management strategies from the literature, and surveyed chronic kidney disease clinics across Canada to identify the strategies they are using to assist patients and caregivers in managing chronic kidney disease. Our next steps are to identify and prioritize self-management strategies that are important to adults with chronic kidney disease by involving patients and their caregivers. Their perspectives and involvement will direct the development of a range of self-management support strategies than can be individualized to patients’ unique situations, needs, priorities and preferences. At the end of this process, we will use the findings to refine and test selected self-management support strategies, including the use of a self-management tool targeting patients, to determine whether they are effective in improving disease control, as well as the patient’s experience of well-being and satisfaction with care.