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. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated.
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.
Patient priorities for living well : A focus on life participation
Chronic kidney disease (CKD), its associated symptoms and its treatment, including medications, dietary and fluid restrictions, and kidney replacement therapy, can disrupt and constrain daily living and impair the overall quality of life of patients and their family members.
Consequently, this can also impact treatment satisfaction and clinical outcomes¹. Despite this, the past several decades have seen limited improvement in the quality of life of people with CKD¹. To advance research, practice and policy, there is increasing recognition of the need to identify and address patient priorities, values and goals ¹.Several regional and global kidney health projects have addressed these important questions including the Standardized Outcomes in Nephrology (SONG) with more than 9000 patients, family members and health professionals from over 70 countries², ³.
Across all treatment stages, including CKD, dialysis and transplantation, SONG participating children and adults with CKD consistently gave higher priority to symptoms and life impacts than health professionals², ³. In comparison, health professionals gave higher priority to mortality and hospitalization than patients and family members.
Patient-prioritized outcomes are shown in Figure 1. Irrespective of the type of kidney disease or treatment stage, patients wanted to be able to live well, maintain their role and social functioning, protect some semblance of normality, and have a sense of control over their health and wellbeing. Life participation, defined as the ability to do meaningful activities of life including, but not limited to, work, study, family responsibilities, travel, sport, social and recreational activities, was established a critically important outcome across all treatment stages of CKD¹, ².
The World Kidney Day (WKD) Steering Committee calls for the inclusion of life participation, a key focus in the care of patients with CKD, to achieve the ultimate goal of living well with kidney disease.
This calls for the development and implementation of validated patient-reported outcome measures, which could be used to assess and address areas of life participation in routine care. Monitoring of life participation could be supported by regulatory agencies as a metric for quality care or to support labeling claims for medicines and devices.
Patient empowerment, partnership and a paradigm shift towards a strengths-based approach to care
Patients with CKD and their family members including care partners should be empowered to achieve the health outcomes and life goals that are meaningful and important to them. The WHO defines patient empowerment as ‘a process through which people gain greater control over decisions or actions affecting their health’,⁶ which requires patients to understand their role, to have knowledge to be able to engage with clinicians in shared decision-making, skills and support for self-management.
The WKD Steering Committee advocates for strengthened partnership with patients in the development, implementation and evaluation of interventions for practice and policy settings that enable patients to live well with kidney diseases. This needs to be supported by consistent, accessible and meaningful communication.
Figure 1: Conceptual framework of ‘Living Well with Kidney Disease’ based on patient
The role of care partner
A care partner is often an informal caregiver who is also a family member of the patient with CKD ¹¹. They may take on a wide range of responsibilities including coordinating care (including transportation to appointments), administration of treatment including medications, home dialysis assistance and supporting dietary management. Caregivers of patients with CKD have reported depression, fatigue, isolation and also burnout.
The role of the care partner has increasingly become more important in CKD care given the heightened complexity in communicative and therapeutic options including the expansion of telemedicine under the coronavirus disease 2019 (COVID-19) pandemic and given the goal to achieve higher life expectancy with CKD¹². Hence, the abovementioned principles of life participation need to equally apply to care partners as well as all family members and friends involved in CKD care.
Living with kidney disease in low income regions
In low- and lower-middle-income countries (LICs and LMICs) including in sub-Saharan Africa, South East Asia and Latin America, patients’ ability to self-manage or cope with the chronic disease vary but may often be influenced by internal factors including spirituality, belief system and religiosity, and external factors including appropriate knowledge of the disease, poverty, family support system and one’s grit and social relations network.
In LIC regions, where there are often a relatively low number of physicians and even lower number of kidney care providers per population especially in rural areas, a stepwise approach can involve local and national stakeholders including both nongovernmental organizations and government agencies by (i) extending kidney patient education in rural areas, (ii) adapting telehealth technologies if feasible to educate patients and train local community kidney care providers and (iii) implementing effective retention strategies for rural kidney health providers including adapting career plans and competitive incentives.
Many patients in low-resource settings present in very late stage, needing to commence emergency dialysis¹⁴. The very few fortunate ones to receive kidney transplantation may acquire an indescribable chance at normal life again, notwithstanding the high costs of immunosuppressive medications in some countries.
Patients diagnosed with glomerulonephritis who have an appropriate characterization of their disease from kidney biopsies and histology, who receive appropriate therapies and achieve remission, are relieved and are very grateful. Patients are glad to discontinue dialysis following resolution of acute kidney injury or acute on CKD. Many CKD patients who have residual kidney function appreciate being maintained in a relatively healthy state with conservative measures, without dialysis. They experience renewed energy when their anemia is promptly corrected using erythropoiesis-stimulating agents. They are happy when their peripheral edema resolves with treatment.
World Kidney Day 2021 Advocacy
WKD 2021 theme of ‘Living Well with Kidney Disease’ is deliberately chosen to have the goals to redirect more focus on plans and actions toward achieving patient-centered wellness. Examples include funding for erythropoiesis-stimulating agents and anti-pruritic agents for managing anemia and itchiness, respectively, to name but a few¹⁵, ¹⁶. Home dialysis therapies have been consistently found to improve patient autonomy and flexibility, and quality of life in a cost-effective manner, enhancing life participation. Promoting home dialysis therapies should tie in with appropriate ‘assisted dialysis’ programs to reduce patient and care partner fatigue and burnout.
Also, examples like self-management programs, cognitive behavioral therapy and group therapies for managing depression, anxiety and insomnia should be promoted before resorting to medications.
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 an effective secondary prevention program, 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
Conclusion
The WKD 2021 theme of ‘Living Well with Kidney Disease’ is deliberately chosen to have the goals to redirect more focus on plans and actions toward achieving patient-centered wellness. Notwithstanding the COVID-19 pandemic that has overshadowed many activities in 2020 and beyond, the WKD 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 effective symptom management and patient empowerment.
Patients with preexisting kidney disease and their care partners should feel supported to live well through concerted efforts by kidney care communities and other stakeholders throughout the world, even during a world-shattering pandemic such as COVID-19 that may drain many resources²⁰. Living well with kidney disease is an uncompromisable goal of all kidney foundations, patient groups and professional societies.
Credits
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.
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