Rhee Connie M, Edwards Dawn, Ahdoot Rebecca S, Burton James O, Conway Paul T, Fishbane Steven, Gallego Daniel, Gallieni Maurizio, Gedney Nieltje, Hayashida Glen, Ingelfinger Julie, Kataoka-Yahiro Merle, Knight Richard, Kopple Joel D, Kumarsawami Latha, Lockwood Mark B, Murea Mariana, Page Victoria, Sanchez J Emilio, Szepietowski Jacek C, Lui Siu-Fai, Kalantar-Zadeh Kamyar
Division of Nephrology Hypertension and Kidney Transplantation, University of California Irvine, Orange, California, USA.
Forum of ESRD Networks Kidney Patient Advisory Council, New York, New York, USA.
Kidney Int Rep. 2022 Jun 30;7(9):1951-1963. doi: 10.1016/j.ekir.2022.06.015. eCollection 2022 Sep.
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.
慢性肾脏病（CKD）会带来高负担的尿毒症症状，这些症状可能未得到充分认识、诊断和治疗。诸如CKD相关瘙痒和情绪/心理困扰等令人不适的症状，往往出现在症状群中，治疗一种症状可能会缓解该症状群中的其他症状。“肾脏病患者健康生活与有效症状管理共识会议”召集了全球肾脏病倡导组织和肾脏网络的健康专家及负责人，讨论与CKD相关的令人不适的症状对患者健康和福祉的影响，并考虑优化症状管理的策略。优化症状管理是保守和预防性管理的基石，其目的是预防或推迟透析开始。对于需要透析的肾功能不全患者（KDRD），逐步过渡到透析和家庭透析模式提供了个性化方法。鉴于“衰竭”作为肾脏描述词的负面含义以及CKD病程中的成功案例，建议使用KDRD这一术语。让CKD患者识别并优先考虑其个人价值观和个体需求，对于确保他们积极参与CKD管理（包括KDRD）至关重要。需要以患者为中心的沟通和护理，以确保多样性、公平性和包容性；考虑CKD患者健康素养的教育/宣传；以及CKD患者、护理伙伴和提供者之间的共同决策。通过将CKD患者的需求（包括有效的症状管理）置于治疗的中心位置，可以以符合他们目标的方式对CKD进行最佳治疗。
