Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere

Abstract

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care partners. Empowering patients and their care partners, including family members and friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable increased life participation. There is a need to broaden the focus on living well with kidney disease and reengagement in life, including emphasis on the patient being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education about and awareness of the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labeling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care partners should feel supported to live well through concerted efforts by kidney care communities, including during pandemics. In the overall wellness program for patients with kidney disease, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures across populations, professionals, and policy makers, applicable to both developed and developing countries.

Kidney health for all: bridging the gap in kidney health education and literacy

“…In an ambulatory care setting at an appointment, in the emergency department or in the inpatient setting, these healthcare professionals often see and relate to the patient first, last and in between, given that physician encounters are often short and focused. Hence the non-physician healthcare workers have many opportunities to discuss kidney disease–related topics with the individuals and their care partners and to empower them [ 17 , 18 ]. For instance, medical assistants can help identify those with or at risk of developing CKD and can initiate educating them and their family members about the role of diet and lifestyle modification for primary, secondary and tertiary prevention of CKD while waiting to see the physician [ 19 ].…”

Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy

“…Hence, the nonphysician health care workers have many opportunities to discuss kidney disease–related topics with the individuals and their care partners and to empower them. 17 , 18 For instance, medical assistants can help identify those with or at risk of developing CKD and can initiate educating them and their family members about the role of diet and lifestyle modification for primary, secondary, and tertiary prevention of CKD while waiting to see the physician. 19 Some health care workers provide networking and support for kidney patient advocacy groups and kidney support networks, which have been initiated or expanded via social media platforms ( Figure 1 ).…”

Kidney Health For All: Bridging the Gap in Kidney Health Education and Literacy

“…Hence, the nonphysician health care workers have many opportunities to discuss kidney disease–related topics with the individuals and their care partners and to empower them. 17 , 18 For instance, medical assistants can help identify those with or at risk of developing CKD and can initiate educating them and their family members about the role of diet and lifestyle modification for primary, secondary, and tertiary prevention of CKD while waiting to see the physician. 19 Some health care workers provide networking and support for kidney patient advocacy groups and kidney support networks, which have been initiated or expanded via social media platforms ( Fig 1 ).…”