Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere
Open Access
- 1 June 2021
- journal article
- editorial
- Published by FapUNIFESP (SciELO) in Brazilian Journal of Nephrology
- Vol. 43 (2), 142-149
- https://doi.org/10.1590/2175-8239-jbn-2020-0241
Abstract
Living with chronic kidney disease (CKD) is associated with hardships for patients and their care- partners. Empowering patients and their carepartners, including family members or friends involved in their care, may help minimize burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including emphasis on patients 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 and awareness on 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 labelling 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 kidney disease patients, 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 throughout populations, professionals, and policy makers, applicable to both developed and developing countries.Keywords
This publication has 17 references indexed in Scilit:
- Kidney health for everyone everywhere—from prevention to detection and equitable access to careKidney International, 2020
- Remote Management for Peritoneal Dialysis: A Qualitative Study of Patient, Care Partner, and Clinician Perceptions and Priorities in the United States and the United KingdomKidney Medicine, 2019
- A Technology Roadmap for Innovative Approaches to Kidney Replacement TherapiesClinical Journal of the American Society of Nephrology, 2019
- Pruritus and Patient Reported Outcomes in Non-Dialysis CKDClinical Journal of the American Society of Nephrology, 2019
- Economic and quality of life burden of anemia on patients with CKD on dialysis: a systematic reviewJournal of Medical Economics, 2019
- Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshopKidney International, 2018
- Patients experiences of self-management and strategies for dealing with chronic conditions in rural MalawiPLOS ONE, 2018
- The strengths based approach as a service delivery model for severe mental illness: a meta-analysis of clinical trialsBMC Psychiatry, 2014
- Development of a measure of caregiver burden in paediatric chronic kidney disease: The Paediatric Renal Caregiver Burden ScaleJournal of Health Psychology, 2014
- The Enormity of Chronic Kidney Disease in Nigeria: The Situation in a Teaching Hospital in South-East NigeriaJournal of Tropical Medicine, 2010