After promoting the prevention of kidney diseases for several years, steering committee members for World Kidney Day now are taking a different approach. This year’s celebration, on Thursday, March 11, will instead focus on living well for patients already diagnosed with kidney diseases and for these patients’ families and care partners.
Chronic kidney disease (CKD) and its associated symptoms and treatments can disrupt and constrain daily living and impair overall quality of life for patients and their family members, steering committee members wrote in an editorial in the journal Kidney International (1). Yet despite their level of disease or treatment stage, the authors said, patients want to be able to live well, maintain their role in society and social functioning, protect some semblance of normality, and have a sense of control over their health and well-being.
Health professionals and patients with kidney disease may have different priorities, explained Philip Kam-Tao Li, MD, FRCP, a senior consultant physician and honorary professor at Prince of Wales Hospital, The Chinese University of Hong Kong, and a co-chair of the steering committee, on behalf of the International Society of Nephrology (ISN).
Physicians, for example, may focus on metrics, like hospitalizations, lengths of stay, and mortality rates, Li said: “We are not saying patients do not care about these, but they may care more about their well-being, including pain, itchiness, and being able to eat and sleep well. This year’s theme is trying to engage more patients and caregivers.”
Healthcare professionals and patients should focus on “life participation”—patients’ ability to engage in meaningful activities, such as work, study, travel, sports, and other social and recreational activities—Li said. The editorial calls for the development and implementation of validated patient-reported outcome measures, which could be used during routine care to assess and address areas of life participation.
About 10%−15% of adults in most nations have kidney diseases, Kamyar Kalantar-Zadeh, MD, PhD, the other steering committee co-chair, said on behalf of the International Federation of Kidney Foundations–World Kidney Alliance. He is chief of nephrology and professor of medicine at the University of California, Irvine.
“We need to make sure that we think of these individuals and that their contributions to society remain important,” he said. “They need to live long and prosper with kidney disease, and therefore, the 2021 celebration is dedicated to all of them and to their care partners.”
Nephrologists are at the frontier for making this process happen, Kalantar-Zadeh said.
“We spend a lot of time providing care to them in our CKD clinics, the hospital, and in dialysis and kidney transplant centers,” he said. “We sometimes write orders for dialysis or transplant medications and move on. We forget that they may be suffering—they may have pain, cramps, nausea/vomiting, mental health issues, or other symptoms…. If I talk to my patients for 10 minutes, at least one minute should be inquiring how they are doing at home, if life has meaning for them, and how we can direct them to resources to support them and their families.”
The editorial authors said they want to promote to policymakers an increased focus on both drug and non-drug programs to improve patient wellness, including multidisciplinary approaches for effective symptom management and funding for erythropoiesis-stimulating and anti-pruritic agents to manage anemia and itching. Additionally, care guidelines should be adapted for vulnerable and disadvantaged populations with kidney disease and their care partners
World Kidney Day is a joint initiative of ISN and the International Federation of Kidney Foundations. See https://worldkidneyday.org/.