World Kidney Day 2021: Living Well With Kidney Disease by Patient and Care Partner Empowerment—Kidney Health for Everyone Everywhere

Abstract

Patient Priorities for Living Well: A Focus on Life Participation Chronic kidney disease (CKD) and its associated symptoms and treatment, including kidney replacement therapy, can disrupt daily living and impair the quality of life of patients and their family members. Consequently, this can impact treatment satisfaction and clinical outcomes. 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 efforts have addressed these important questions, including the Standardised Outcomes in Nephrology (SONG) initiative, which includes more than 9,000 patients, family members, and health professionals from over 70 countries. 2,3 Children and adults with CKD have consistently given higher priority to symptoms and life impacts than health professionals. 2,3 In comparison, health professionals have given higher priority to mortality and hospitalization than patients and family members. The patient-prioritized outcomes are shown in Fig 1. 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 as a critically important outcome across all treatment stages of CKD. 1,2 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. The quotations from patients with kidney disease provided in Box S1 demonstrate how life participation reflects the ability to live well with CKD. 4 The World Health Organization (WHO) specifically defines participation as "involvement in a life situation." 5 Life participation places the life priorities and values of those affected by CKD and their families at the center of decision making. The World Kidney Day (WKD) Steering Committee calls for the inclusion of life participation as a key focus in the care of patients with CKD to achieve the ultimate goal of living well with kidney disease. This necessitates the development and implementation of validated patientreported 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

Patient-centred approaches for the management of unpleasant symptoms in kidney disease

“…Proper implementation of effective symptom management, including CKD-focused palliative care, will require a prominent role of patients and their care-partners in organizing, prioritizing and evaluating care. Partnerships between patients, health-care providers and policymakers across patient care, education, research, service and networking is indispensable as a strategy to overcome the current unmet need for inpatient empowerment 27 . This approach could include, for example, an expanded use of CKD-focused palliative care, so that instead of having a one-time palliative care consultation during an inpatient hospitalization, a dialysis patient or potential dialysis candidate could be evaluated for concurrent symptom management as an outpatient and then during each hospitalization, independent of the severity of illness 7 .…”

“…Understanding unpleasant symptoms in the context of a theoretical framework is essential to advancing symptom science in CKD and to achieving the important goal of living well with kidney disease through effective symptom management 27 . These theoretical frameworks explicitly state concepts and assumptions related to symptom science, allowing researchers and clinicians to evaluate them critically and objectively for given applications in the management of patients with CKD.…”

Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy

“…In an ambulatory care setting at an appointment, in the emergency department, or in the inpatient setting, these health care professionals often see and relate to the patient first, last, and in between, given that physician encounters are often short and focused. Hence, the nonphysician health care workers have many opportunities to discuss kidney diseaserelated topics with the individuals and their care partners and to empower them [17,18]. For instance, medical assistants can help identify those with or at risk of developing CKD and can initiate educating them and their family members about the role of diet and lifestyle modification for primary, secondary, and tertiary prevention of CKD while waiting to see the physician [19].…”

The spectrum of kidney dysfunction requiring chronic dialysis therapy: Implications for clinical practice and future clinical trials

“…A large body of research shows that patients receiving dialysis therapy experience a wide array of general symptoms of the uremia syndrome (dyspnea, faintness/dizziness, nausea, and appetite loss); neuromuscular problems (muscular ache and extremity numbness); and skin problems (dry, itchy skin) [29][30][31] ; often in the form of symptom clusters. 32 A few cross-sectional studies showed that the severity of gastrointestinal and cardiopulmonary symptoms increased with length of time on dialysis and those with urine output <100 ml/day had more electrolyte imbalances and higher burden of unpleasant symptoms within symptom clusters. 31,33 Assessed with validated instruments, physical decline, frailty, and cognitive impairment also directly correlate with dialysis vintage.…”