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, USA.
Department of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, Chinese University of Hong Kong, Hong Kong.
Arch Argent Pediatr. 2021 Jun;119(3):213. doi: 10.5546/aap.2021.eng.213.
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 minimize 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 program 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 programs, should be promoted. WKD 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.
患有慢性肾脏病（CKD）会给患者及其护理人员带来困难。赋予患者及其护理人员（包括参与其护理的家庭成员或朋友）权力，可能有助于减轻 CKD 相关症状的负担和后果，使他们能够参与生活。有必要扩大重点，关注与肾脏疾病共存和重新融入生活，包括强调患者的自我控制。世界肾脏日（WKD）联合指导委员会宣布 2021 年为“与肾脏疾病共存”的一年，努力提高关于增强患者权能和参与生活这一重要目标的教育和认识。这需要开发和实施经过验证的患者报告结局测量工具，以评估和解决日常生活参与的各个领域。监管机构可以将其作为衡量护理质量的指标，或支持药品和设备的标签声明。资助机构可以为解决患者优先事项的研究设立有针对性的呼吁。患有肾脏疾病的患者及其护理人员应该在包括大流行期间在内的肾脏护理社区的共同努力下，感到自己能够得到良好的支持。在肾脏病患者的整体健康计划中，应重申预防的必要性。在有效的二级和三级预防计划之后，尽管患有肾脏疾病，但仍应通过延长的健康期来实现早期检测，并应促进这一做法。WKD 2021 继续呼吁提高人群、专业人员和决策者对预防措施重要性的认识，这对发达国家和发展中国家都适用。
