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Editorial
. 2021 Mar 10:8:2054358121995276.
doi: 10.1177/2054358121995276. eCollection 2021.

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
Affiliations
Editorial

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

Kamyar Kalantar-Zadeh et al. Can J Kidney Health Dis. .

Abstract
in English, French

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 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 labeling 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.

Vivre avec l’insuffisance rénale chronique (IRC) représente un fardeau pour les patients et leurs partenaires soignants, dont leurs familles et amis. Une façon d’alléger ce fardeau et de réduire les conséquences des symptômes de l’IRC sur la participation à la vie serait de favoriser une plus grande autonomie des patients et de leurs partenaires soignants. Pour ce faire, l’accent mis sur le bien vivre avec la maladie et sur la participation à la vie doit être élargi en privilégiant notamment de mettre les patients en contrôle. Pour accroître l’éducation et la sensibilisation sur la responsabilisation des patients et, ultimement, encourager leur participation à la vie, le Comité directeur bipartite de la Journée Mondiale du Rein (JMR) a déclaré 2021 l’année du « bien vivre avec une maladie rénale ». Une stratégie qui nécessite l’élaboration et la mise en œuvre de mesures validées des résultats signalés par le patient afin d’aborder la participation à la vie dans les soins courants. Cette stratégie pourrait être appuyée par les organismes de réglementation comme mesure de qualité des soins ou pour appuyer les demandes relatives à l’étiquetage des médicaments et des dispositifs. Les organismes subventionnaires pourraient quant à eux établir des appels d’offres à objectifs de recherche définis afin de répondre aux priorités des patients. Les patients et leurs partenaires soignants devraient se sentir soutenus, même en contexte de pandémie, par des efforts concertés des communautés de soins en santé rénale. Dans le cadre du program de bien-être global destiné aux patients atteints d’une néphropathie, il convient de réitérer la prévention. À la suite de programs efficaces de prévention secondaire et tertiaire, il convient également de promouvoir une détection précoce avec une évolution prolongée du bien-être malgré une maladie rénale. La JMR 2021 continue d’appeler à une plus grande sensibilisation des populations, des professionnels et des décideurs quant à l’importance de mesures préventives applicables tant dans les pays développés que dans les pays en développement.

Keywords: care-partner; health policy; low-middle-income countries; patient empowerment.

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Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: 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. ET, LK, SL, IU, SA, AB, SD, TH, AH, RK, SK, MN, AP, and AT have declared that no conflict of interest exists. This article was originally published in Kidney International, volume 99, pages 278-284, Copyright World Kidney Day Steering Committee (2021), and reprinted concurrently in several journals. The articles cover identical concepts and wording but vary in minor stylistic and spelling changes, detail, and length of manuscript in keeping with each journal’s style. Any of these versions may be used in citing this article.

Figures

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

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