Hong Kong Med J 2021 Apr;27(2):97–8.e1–6
Hong Kong Academy of Medicine. CC BY-NC-ND 4.0
Living well with kidney disease by patient and care partner empowerment: kidney health for everyone everywhere
Kamyar Kalantar-Zadeh, MD, PhD1 #; Philip KT Li, MD2 #; Ekamol Tantisattamo, MD, MPH3; Latha Kumaraswami, BA4 #; Vassilios Liakopoulos, MD, PhD5 #; SF Lui, MD6 #; Ifeoma Ulasi, MD7 #; Sharon Andreoli, MD8 #; Alessandro Balducci, MD9 #; Sophie Dupuis, MA10 #; Tess Harris, MA11; Anne Hradsky, MA10; Richard Knight, MBA12; Sajay Kumar, BCom4; Maggie Ng13; Alice Poidevin, MA10; Gamal Saadi, MD14 #; Allison Tong, PhD15
1 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, United States
2 Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong
3 Division of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, California, United States
4 Tanker Foundation, Chennai, India
5 Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece
6 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
7 Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria
8 James Whitcomb Riley Hospital for Children, Indiana University School of Medicine, Indianapolis, Indiana, United States
9 Italian Kidney Foundation, Rome, Italy
10 World Kidney Day Office, Brussels, Belgium
11 Polycystic Kidney Disease Charity, London, United Kingdom
12 American Association of Kidney Patients, Tampa, Florida, United States
13 Hong Kong Kidney Foundation, Hong Kong
14 Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, Giza, Egypt
15 Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
# Members of the World Kidney Day Steering Committee
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 minimise 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 programme 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 programmes, 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.
Patient priorities for living well: a focus on life participation
Chronic kidney disease, 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 outcomes.1 Despite this, the past several decades have seen limited improvement in the quality of life of people with CKD.1 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 Standardised Outcomes in Nephrology with more than 9000 patients, family members, and healthcare professionals from over 70 countries.2 3 Across all treatment stages, including CKD, dialysis and transplantation, Standardised Outcomes in Nephrology participating children and adults with CKD consistently gave higher priority to symptoms and life impacts than healthcare professionals.2 3 In comparison, healthcare professionals gave higher priority to mortality and hospitalisation than patients and family members. The patient-prioritised outcomes are shown in the Figure. 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 well-being.
Figure. Conceptual framework of ‘Living Well with Kidney Disease’ based on patient centeredness and empowering patient with focus on effective symptom management and life participation
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 CKD.1 2 The quotations from patients with kidney disease provided in the Box demonstrates how life participation reflects the ability to live well with CKD.4 According to the World Health Organization (WHO), participation refers to “involvement in a life situation.”5 This concept is more specific than the broader construct of quality of life. Life participation places the life priorities and values of those affected by CKD and their family at the centre of decision making. The World Kidney Day 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, that 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 labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients, including life participation.
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. For patients receiving dialysis, understanding the rationale for a lifestyle change, having access to practical assistance and family support promoted patient empowerment, while feeling limited in life participation undermined their sense of empowerment.7
The World Kidney Day 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. Meaningful involvement of patients and family members across the entire research process, from priority setting and planning the study through to dissemination and implementation, is now widely advocated.8 There have also been efforts, such as the Kidney Health Initiative, to involve patients in the development of drugs and devices to foster innovation.9
We urge for greater emphasis on a strengths-based approach as outlined in the Table, which encompasses strategies to support patient resilience, harness social connections, build patient awareness and knowledge, facilitate access to support, and establish confidence and control in self-management. The strengths-based approach is in contrast to the medical model where chronic disease is traditionally focussed on pathology, problems, and failures.10 Instead, the strengths-based approach acknowledges that each individual has strengths and abilities to overcome the problems and challenges faced, and requires collaboration and cultivation of the patient’s hopes, aspirations, interests, and values. Efforts are needed to ensure that structural biases, discrimination, and disparities in the healthcare system also need to be identified, so all patients are given the opportunity to have a voice.
Table. Suggested strategies for ‘living well with chronic kidney disease’ using a strengths-based approach
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 CKD.12 The experience of caring for a partially incapacitated family member with progressive CKD can represent a substantial burden on the care partner and may impact family dynamics. Not infrequently, the career goals and other occupational and leisure aspects of the life of the care partner are affected because of CKD care partnership, leading to care partner overload and burnout. Hence, the above-mentioned 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 including in sub-Saharan Africa, Southeast Asia, and Latin America, patient’s 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. The support system comprising healthcare providers and caregivers plays a crucial role as most patients rely on them in making decisions, and for the necessary adjustments in their health behaviour.13 In low-income 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 non-governmental organisations and government agencies by (1) extending kidney patient education in rural areas; (2) adapting telehealth technologies if feasible to educate patients and train local community kidney care providers, and (3) 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 dialysis.14 The very few fortunate ones to receive kidney transplantation may acquire an indescribable chance to normal life again, notwithstanding the high costs of immunosuppressive medications in some countries. For some patients and care partners in low-income regions, spirituality and religiosity may engender hope, when ill they are energised by the anticipation of restored health and spiritual wellbeing. For many patients, informing them of a diagnosis of kidney disease is a harrowing experience both for the patient (and caregivers) and the healthcare professional. Most patients present to kidney physicians (usually known as “renal physicians” in many of these countries) with trepidations and apprehension. It is rewarding therefore to see the patient’s anxiety dissipate after reassuring him or her of a diagnosis of simple kidney cysts, urinary tract infection, simple kidney stones, solitary kidneys, etc, that would not require extreme measures like kidney replacement therapy. Patients diagnosed with glomerulonephritis who have an appropriate characterisation 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-chronic kidney disease.
Many patients with CKD who have residual kidney function appreciate being maintained in a relatively healthy state with conservative measures, without dialysis. They experience renewed energy when their anaemia is promptly corrected using erythropoiesis-stimulating agents. They are happy when their peripheral oedema resolves with treatment. For those on maintenance haemodialysis who had woeful stories from emergency femoral cannulations, they appreciate the construction of good temporary or permanent vascular accesses. Many patients in low-resource settings present in very late stage needing to commence emergency dialysis. Patients remain grateful for waking from a uraemic coma or recovering from recurrent seizures when they commence dialysis.
World kidney day 2021 advocacy
World Kidney Day 2021 theme on ‘Living Well with Kidney Disease’ is deliberately chosen to have the goals to redirect more focus on plans and actions towards achieving patient-centred wellness. “Kidney Health for Everyone, Everywhere” with emphasis on patient-centred wellness should be a policy imperative that can be successfully achieved if policy makers, nephrologists, healthcare professionals, patients, and care partners place this within the context of comprehensive care. The requirement of patient engagement is needed. The WHO in 2016 put out an important document on patient empowerment15:
“Patient engagement is increasingly recognised as an integral part of healthcare and a critical component of safe people-centred services. Engaged patients are better able to make informed decisions about their care options. In addition, resources may be better used if they are aligned with patients’ priorities and this is critical for the sustainability of health systems worldwide. Patient engagement may also promote mutual accountability and understanding between patients and healthcare providers. Informed patients are more likely to feel confident to report both positive and negative experiences and have increased concordance with mutually agreed care management plans. This not only improves health outcomes but also advances learning and improvement while reducing adverse events.”
In the International Society of Nephrology Community Film Event at World Congress of Nephrology 2020, it is good to see a quote in the film from patients:
“Tell me. I will forget; Show me. I will remember; Involve me. I will understand.”
The International Society of Nephrology Global Kidney Policy Forum 2019 included a patient speaker Nicki Scholes-Robertson from New Zealand:
“Culturally appropriate and sensitive patient information and care are being undertaken in New Zealand to fight inequities in kidney health, especially in Maori and other disadvantaged communities.”
World Kidney Day 2021 would like to promote to the policy makers on increasing focus and resources on both drug and non-drug programmes in improving patient wellness. Examples include funding for erythropoiesis-stimulating agents and antipruritic agents for managing anaemia and itchiness, respectively, just name but a few.16 17 Home dialysis therapies have been consistently found to improve patient autonomy and flexibility, quality of life in a cost-effective manner, enhancing life participation. Promoting home dialysis therapies should tie in with appropriate ‘assisted dialysis’ programmes to reduce patient and care partner fatigue and burnout. Also, examples like self-management programmes, cognitive behavioural therapy, and group therapies for managing depression, anxiety, and insomnia should be promoted before resorting to medications.18 The principle of equity recognises that different people with different levels of disadvantage require different approaches and resources to achieve equitable health outcomes. The kidney community should push for adapted care guidelines for vulnerable and disadvantaged populations. The involvement of primary care and general physicians especially in low and lower-middle-income countries would be useful in improving the affordability and access to services through the public sector in helping the symptom management of patients with CKD and improve their wellness. In the overall wellness programme 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 programme, should be promoted.19 Prevention of CKD progression can be attempted by lifestyle and diet modifications such as a plant-dominant low-protein diet and by means of effective pharmacotherapy including administration of sodium-glucose transport protein 2 inhibitors.20 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.19
Effective strategies to empower patients and their care partners strive to pursue the overarching goal of minimising the burden of CKD-related symptoms in order to enhance patient satisfaction, health-related quality of life, and life participation. World Kidney Day 2021 theme on ‘Living Well with Kidney Disease’ is deliberately chosen to have the goals to redirect more focus on plans and actions towards achieving patient-centred wellness. Notwithstanding the COVID-19 pandemic that had overshadowed many activities in 2020 and beyond, the World Kidney Day 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. Whereas the World Kidney Day continues to emphasise the importance of effective measures to prevent kidney disease and its progression,18 patients with pre-existing 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 as COVID-19 that may drain many resources.21 Living well with kidney disease is an uncompromisable goal of all kidney foundations, patient groups, and professional societies alike, to which the International Society of Nephrology and the International Federation of Kidney Foundation World Kidney Alliance are committed at all times.
K Kalantar-Zadeh 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. PKT Li reports personal fees from Fibrogen and Astra-Zeneca. G Saadi reports personal fees from Multicare, Novartis, Sandoz, and Astra-Zeneca. V Liakopoulos reports non-financial support from Genesis Pharma. All other authors have disclosed no conflicts of interest.
This editorial received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
This article was 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.
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