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

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; Allison Tong

doi:10.21804/24-1-4429

Kamyar Kalantar-Zadeh 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 https://orcid.org/0000-0002-8666-0725
Philip Kam-Tao Li Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong, China https://orcid.org/0000-0001-9879-8388
Ekamol Tantisattamo Division of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, California, USA https://orcid.org/0000-0003-0883-6892
Latha Kumaraswami Tanker Foundation, Chennai, India
Vassilios Liakopoulos Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece https://orcid.org/0000-0002-7564-2724
Siu-Fai Lui 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 https://orcid.org/0000-0003-0800-8982
Ifeoma Ulasi Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria https://orcid.org/0000-0001-7783-3025
Sharon Andreoli James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, Indiana, USA
Alessandro Balducci Italian Kidney Foundation, Rome, Italy https://orcid.org/0000-0002-7432-1494
Sophie Dupuis World Kidney Day Office, Brussels, Belgium
Tess Harris Polycystic Kidney Disease Charity, London, UK https://orcid.org/0000-0003-3659-7438
Anne Hradsky World Kidney Day Office, Brussels, Belgium
Richard Knight American Association of Kidney Patients, Tampa, Florida, USA
Sajay Kumar Tanker Foundation, Chennai, India
Maggie Ng Hong Kong Kidney Foundation, Hong Kong, China
Alice Poidevin World Kidney Day Office
Gamal Saadi Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt https://orcid.org/0000-0002-6280-1685
Allison Tong Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia https://orcid.org/0000-0001-8973-9538

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 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 policy makers, applicable to both developed and developing countries.

Author Biographies

Kamyar Kalantar-Zadeh, 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

Division of Nephrology and Hypertension and Kidney Transplantation, University of California Irvine, Orange, California, USA

Professor of Medicine

Philip Kam-Tao Li, Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong, China

Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong, China

Profesor

Ekamol Tantisattamo, Division of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, California, USA

Division of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, California, USA

Assistant Clinical Professor of Medicine

Vassilios Liakopoulos, Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece

Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece

Associate Professor of Nephrology

Siu-Fai Lui, 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

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

Professor

Ifeoma Ulasi, Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria

Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria

Professor

Sharon Andreoli, James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, Indiana, USA

James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, Indiana, USA

Byron P. and Frances D. Hollett Professor Emeritus of Pediatrics

Gamal Saadi, Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt

Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt

Professor of Internal Medicine and Nephrology

Allison Tong, Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia

Professor

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