LIVING WELL WITH KIDNEY DISEASE BY PATIENT AND CARE-PARTNER EMPOWERMENT: KIDNEY HEALTH FOR EVERYONE EVERYWHERE.
Kamyar KALANTAR-ZADEH*1, Philip Kam-Tao LI*2, Ekamol TANTISATTAMO3, Latha KUMARASWAMI4, Vassilios LIAKOPOULOS5, Siu-Fai LUI6, Ifeoma ULASI7, Sharon ANDREOLI8, Alessandro BALDUCCI9, Sophie DUPUIS10, Tess HARRIS11, Anne HRADSKY10, Richard KNIGHT12, Sajay KUMAR4, Maggie NG13, Alice POIDEVIN10, Gamal SAADI14, and Allison TONG15, for the World Kidney Day Steering Committee#
1The 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,
2Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, Chinese University of Hong Kong, Hong Kong,
3Division of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, California, USA,
4Tanker Foundation, Chennai, India,
5Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece,
6Hong 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,
7Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria,
8James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, Indiana, USA,
9Italian Kidney Foundation, Rome, Italy,
10World Kidney Day Office, Brussels, Belgium,
11Polycystic Kidney Disease Charity, London, UK,
12American Association of Kidney Patients. Tampa, Florida, USA,
13Hong Kong Kideny Foundation, Hong Kong, China,
14Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt,
15Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
# Members of the World Kidney Day Steering Committee are: Philip Kam Tao Li, Kamyar Kalantar-Zadeh, Sharon Andreoli, Alessandro Balducci, Sophie Dupuis, Latha Kumaraswami, Vassilios Liakopoulos, Siu-Fai Lui, Gamal Saadi, and Ifeoma Ulasi.
ABSTRACT
Living with chronic kidney disease 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 Joint Steering Committee has declared 2021 the year of “Living Well with Kidney Disease” 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. World Kidney Day 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: Patient empowerment, care-partner, low-middle-income countries, health policy.
Correspondence: Kamyar Kalantar-Zadeh, MD, MPH, PhD, Division of Nephrology and Hypertension and Kidney Transplantation, University of California Irvine School of Medicine, Orange, California, USA
Tel: (714) 456-5142, Fax: (714) 456-6034; Email: kkz@uci.edu,
Philip Kam-Tao Li, MD FRCP FACP, Department of Medicine and Therapeutics, Prince of Wales Hospital, Chinese University of Hong Kong, 30–32 Ngan Shing Street, Shatin, New Territories, Hong Kong, China. Email: philipli@cuhk.edu.hk; ORCID: 0000-0001-9879-8388
Brunei Int Med J. 2021;17:17-25