Correa-Rotter Ricardo, Chadban Steven J, Christen Laura, Damron Kelli Collins, Hamusankwa Lweendo, Jarvis Sarah, Pentakota Surendra, Robles Marisol, Stevens Petrina, Wanner Christoph
Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico.
Royal Prince Alfred Hospital and University of Sydney, Sydney, Australia.
Adv Ther. 2025 Feb;42(2):559-567. doi: 10.1007/s12325-024-03048-9. Epub 2024 Dec 2.
Chronic kidney disease (CKD), a long-term condition in which kidney function declines over time, is a growing global healthcare concern. CKD can have a major impact on the quality of life of patients and their caregivers. Recent research by the International Society of Nephrology highlights that current treatment strategies and policies do not fully address patients' needs. This commentary provides patient insights into the real-life concerns of those who are living with CKD, with main concerns focusing on relationships and support, work and finances, and awareness, prevention, and intervention. Strong support networks are essential for patients and caregivers, but the burden of CKD can make it difficult to maintain personal connections. Limiting disease progression and providing mental health support can help patients and caregivers to maintain their relationships. Work or education can be challenging to manage with CKD; however, employers and educational institutions can create supportive environments that meet the diverse needs of people with CKD. Although delaying disease progression can preserve patient quality of life, people are often unaware of their disease prior to diagnosis, the severity of their CKD, and the risk factors for progression. This presents an opportunity to involve patients in their care by improving education about the benefits of maintaining kidney health. Early identification and holistic intervention could slow disease progression and protect the well-being of patients with CKD and their caregivers. This commentary brings together the diverse perspectives of patients and patient advocacy groups, as well as primary care and specialist healthcare professionals, to advocate for a transformation of CKD management that encourages patient self-care and that prioritizes timely intervention.A patient perspective video and a graphical abstract are available with this article. Addressing the Human Experience of Chronic Kidney Disease: A Call to Transform Kidney Care. Watch Lweendo Hamusankwa discuss his experience of living with chronic kidney disease, from how it impacted his family life to the importance of support networks and patient-facing information. Lweendo advocates for patients to be educated on CKD progression, treatment options, and lifestyle interventions to encourage people to manage their own health and well-being.
慢性肾脏病（CKD）是一种肾功能随时间逐渐下降的长期病症，日益成为全球医疗保健关注的焦点。CKD会对患者及其护理人员的生活质量产生重大影响。国际肾脏病学会最近的研究强调，当前的治疗策略和政策并未充分满足患者的需求。本评论文章提供了患者对CKD患者现实生活中所关心问题的见解，主要关注点集中在人际关系与支持、工作与财务，以及认知、预防和干预方面。强大的支持网络对患者及其护理人员至关重要，但CKD带来的负担可能使维持个人人际关系变得困难。限制疾病进展并提供心理健康支持有助于患者及其护理人员维持人际关系。对于CKD患者来说，管理工作或教育可能具有挑战性；然而，雇主和教育机构可以营造支持性环境，以满足CKD患者的多样化需求。尽管延缓疾病进展可以维持患者的生活质量，但人们在诊断之前往往并不知晓自己患有该病、CKD的严重程度以及疾病进展的风险因素。这为通过加强关于维持肾脏健康益处的教育让患者参与自身护理提供了契机。早期识别和全面干预可以减缓疾病进展，保护CKD患者及其护理人员的健康。本评论文章汇集了患者、患者权益倡导组织以及初级保健和专科医疗专业人员的不同观点，倡导对CKD管理进行变革，鼓励患者自我护理并优先考虑及时干预。本文配有一个患者视角视频和一幅图形摘要。应对慢性肾脏病的人类体验：呼吁变革肾脏护理。观看勒温多·哈穆桑夸讲述他患慢性肾脏病的经历，从疾病如何影响他的家庭生活到支持网络和面向患者信息的重要性。勒温多倡导对患者进行CKD进展、治疗选择和生活方式干预方面的教育，以鼓励人们管理自己的健康和幸福。
