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Editorial
. 2021;52(1):1-7.
doi: 10.1159/000513952. Epub 2021 Mar 4.

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 Tantisattamo  3 , Latha Kumaraswami  4 , Vassilios Liakopoulos  5 , Siu-Fai Lui  6 , Ifeoma Ulasi  7 , Sharon Andreoli  8 , Alessandro Balducci  9 , Sophie Dupuis  10 , Tess Harris  11 , Anne Hradsky  10 , Richard Knight  12 , Sajay Kumar  4 , Maggie Ng  13 , Alice Poidevin  10 , Gamal Saadi  14 , Allison Tong  15 ; for the World Kidney Day Steering Committee
Affiliations
Editorial

Living Well with Kidney Disease by Patient and Care-Partner Empowerment: Kidney Health for Everyone Everywhere

Kamyar Kalantar-Zadeh et al. Am J Nephrol. 2021.

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.

Keywords: Care-partner; Health policy; Low-middle-income countries; Patient empowerment.

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Conflict of interest statement

K.K.-Z. reports honoraria from Abbott, Abbvie, ACI Clinical, Akebia, Alexion, Amgen, Ardelyx, Astra-Zeneca, Aveo, BBraun, Cara Therapeutics, Chugai, Cytokinetics, Daiichi, DaVita, Fresenius, Genentech, Haymarket Media, Hospira, Kabi, Keryx, Kissei, Novartis, Pfizer, Regulus, Relypsa, Resverlogix, Dr Schaer, Sandoz, Sanofi, Shire, Vifor, UpToDate, and ZS-Pharma. P.K.-T.L. reports personal fees from Fibrogen and Astra-Zeneca. G.S. reports personal fees from Multicare, Novartis, Sandoz, and Astra-Zeneca. V.L. reports nonfinancial support from Genesis Pharma.

Figures

Fig. 1
Fig. 1
Conceptual framework of “Living Well with Kidney Disease” based on patient centeredness and empowering patients with focus on effective symptom management and life participation.
See this image and copyright information in PMC

References

    1. Tong A, Manns B, Wang AY, Hemmelgarn B, Wheeler DC, Gill J, et al. SONG Implementation Workshop Investigators. Implementing core outcomes in kidney disease report of the Standardized Outcomes in Nephrology (SONG) implementation workshop. Kidney Int. 2018 Dec;94((6)):1053–1068. - PMC - PubMed
    1. Carter SA, Gutman T, Logeman C, Cattran D, Lightstone L, Bagga A, et al. SONG-GD Investigators Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers. Clin J Am Soc Nephrol. 2020 May;15((5)):673–684. - PMC - PubMed
    1. Hanson CS, Craig JC, Logeman C, Sinha A, Dart A, Eddy AA, et al. Establishing core outcome domains in pediatric kidney disease report of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-KIDS) consensus workshops. Kidney Int. 2020;98((3)):553–565. - PubMed
    1. Gonzalez AM, Gutman T, Lopez-Vargas P, Anumudu S, Arce CM, Craig JC, Dunn L, Eckardt KU, Harris T, Levey AS, Lightstone L, Scholes-Robertson N, Shen JI, Teixeira-Pinto A, Wheeler DC, White D, Wilkie M, Jadoul M, Winkelmayer WC, Tong A. Patient and caregiver priorities for outcomes in CKD a multinational nominal group technique study. Am J Kidney Dis. 2020;76((5)):679–89. - PubMed
    1. WHO Towards a common language for functioning, disability and health. EIP/GPE/CAS/01.3. WHO. 2002

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