This year’s theme for World Kidney Day, “Living Well With Kidney Disease,” is extremely important given the extent to which patients are required to manage their own care on a daily basis. Living well with kidney disease means managing dietary needs, mental health, medications and more – all of which can vary greatly for each person.
One Can-SOLVE CKD initiative, launched on World Kidney Day 2021, aims to support patients in living their best lives. After a few years of development, the research team is ready to unveil its new online self-management tool: My Kidneys My Health.
The interactive website covers all of the most important self-management topics identified by kidney patients and professionals. This includes information about kidney disease, diet, medications, symptoms, mental and physical well-being, finances, work and education, and travel. What’s more, the website allows patients to create their own, individualized self-management notes – for example, questions to bring up with their health care professionals.
As with all Can-SOLVE CKD projects, patient partners were heavily involved in the design and implementation of My Kidneys My Health. This includes Dwight Sparkes, whose first-hand experience highlights why the tool is important.
Six weeks after Sparkes had a kidney biopsy in 2014, his doctor diagnosed him with chronic kidney disease. “My head just started spinning,” says Sparkes. “[My doctor] said, well I want you to cut out salt, and he sort of sent me on my way.”
Over the next three years, Sparkes learned the ropes of living well with kidney disease. In 2016, he had the opportunity to join the team behind My Kidneys My Health and instantly realized the importance of the project. Whereas Sparkes had to go to multiple sites to collect disjointed bits of information, he describes My Kidneys My Health as “one-stop shopping” for living well with kidney disease. “It’s a comprehensive self management tool designed by patients for patients,” he explains, noting that he wishes he had access to such a site in the early days following his diagnosis.
To get started in creating the tool, the research group conducted an environmental scan of the self-management support already available to patients in order to identify gaps in support. As well, they convened a group of patients, caregivers, and health professionals (nurses, dietitians, pharmacists, policy-makers, primary care physicians, social workers, and nephrologists) to identify content and other features that should be included in the tool.