Living Well With Kidney Disease and Effective Symptom Management: Consensus Conference Proceedings

Abstract

Chronic kidney disease (CKD) confers a high burden of uremic symptoms that may be underrecognized, underdiagnosed, and undertreated. Unpleasant symptoms, such as CKD-associated pruritus and emotional/psychological distress, often occur within symptom clusters, and treating 1 symptom may potentially alleviate other symptoms in that cluster. The Living Well with Kidney Disease and Effective Symptom Management Consensus Conference convened health experts and leaders of kidney advocacy groups and kidney networks worldwide to discuss the effects of unpleasant symptoms related to CKD on the health and well-being of those affected, and to consider strategies for optimal symptom management. Optimizing symptom management is a cornerstone of conservative and preservative management which aim to prevent or delay dialysis initiation. In persons with kidney dysfunction requiring dialysis (KDRD), incremental transition to dialysis and home dialysis modalities offer personalized approaches. KDRD is proposed as the preferred term given the negative connotations of "failure" as a kidney descriptor, and the success stories in CKD journeys. Engaging persons with CKD to identify and prioritize their personal values and individual needs must be central to ensure their active participation in CKD management, including KDRD. Person-centered communication and care are required to ensure diversity, equity, and inclusion; education/awareness that considers the health literacy of persons with CKD; and shared decision-making among the person with CKD, care partners, and providers. By putting the needs of people with CKD, including effective symptom management, at the center of their treatment, CKD can be optimally treated in a way that aligns with their goals.

Keywords: chronic kidney disease; conservative management; person-centered care; quality of life; symptom clusters; unpleasant symptoms.

Figure 1

Survey results of 4807 people with CKD from 7 member centers of the IFKF–WKA carried out at the beginning of 2021. This survey assessed the frequency of the most common∗ physical, psychological, and life effects on people with CKD. CKD, chronic kidney disease; IFKF–WKA, International Federation of Kidney Foundations–World Kidney Alliance. Mean average frequencies calculated from available data: pruritus (n = 5 centers), and life effects (n = 6 centers each). ∗Most common effects were those reported within the top 5 effects at most centers: the most common physical effects reported were fatigue and sleep problems (each reported in the top 5 at all centers), and pruritus (reported in the top 5 at most centers); the most common psychological effects were concern about the future, anxiety, stress, and depression (each reported in the top 5 at all centers); the most common life effects were financial, ability to work, ability to travel, and lifestyle changes (each reported in the top 5 at most centers). Figure created based on data presented at the consensus conference by Siu-Fai Lui, MD.

Figure 2

A multifaceted approach is required in the conservative and preservative management of CKD.^, CKD, chronic kidney disease.