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Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere
DOI: https://dx.doi.org/10.18565/nephrology.2021.1.20-26
Kamyar Kalantar-Zadeh, Philip Kam-Tao Li, Ekamol Tantisattamo, Latha Kumaraswami, Vassilios Liakopoulos, Siu-Fai Lui, Ifeoma Ulasi, Sharon Andreoli, Alessandro Balducci, Sophie Dupuis, Tess Harris, Anne Hradsky, Richard Knight, Sajay Kumar, Maggie Ng, Alice Poidevin, Gamal Saadi, and Allison Tong
1) The International Federation of Kidney Foundation – World Kidney Alliance (IFKF-WKA), Division of Nephrology and Hypertension and Kidney Transplantation, University of California Irvine, Orange, California, USA; 2) Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, Chinese University of Hong Kong, Hong Kong; 3) Division of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, California, USA; 4) Tanker Foundation, Chennai, India; 5) Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece; 6) Hong Kong Kidney Foundation and the International Federation of Kidney Foundations – World Kidney Alliance,The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong,Hong Kong, China; 7) Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria; 8) James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, Indiana, USA; 9) Italian Kidney Foundation, Rome, Italy; 10) World Kidney Day Office, Brussels, Belgium; 11) Polycystic Kidney Disease Charity, London, UK; 12) American Association of Kidney Patients. Tampa, Florida, USA; 13) Hong Kong Kideny Foundation, Hong Kong, China; 14) Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt; 15) Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
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 or friends involved in their care, may help minimize the 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 an 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 a 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 policymakers, applicable to both developed and developing countries.
Keywords: Patient empowerment, care-partner, low-middle-income countries, health policy
