Kalantar-Zadeh Kamyar, Kam-Tao Li Philip, Tantisattamo Ekamol, Kumaraswami Latha, Liakopoulos Vassilios, Lui Siu-Fai, Ulasi Ifeoma, Andreoli Sharon, Balducci Alessandro, Dupuis Sophie, Harris Tess, Hradsky Anne, Knight Richard, Kumar Sajay, Ng Maggie, Poidevin Alice, Saadi Gamal, Tong Allison
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, China.
Kidney Int. 2021 Feb;99(2):278-284. doi: 10.1016/j.kint.2020.11.004.
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 and friends involved in their care, may help minimize the burden and consequences of CKD-related symptoms to enable increased life participation. There is a need to broaden the focus on living well with kidney disease and reengagement in life, including emphasis on the patient 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 about and awareness of 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 labeling 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 patients with kidney disease, the need for prevention should be reiterated. Early detection with 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 across populations, professionals, and policy makers, applicable to both developed and developing countries.
患有慢性肾脏病（CKD）给患者及其护理伙伴带来诸多困难。赋予患者及其护理伙伴权力，包括参与其护理的家庭成员和朋友，可能有助于减轻与CKD相关症状的负担和后果，从而增加生活参与度。有必要扩大对肾病患者良好生活及重新融入生活的关注，包括强调患者的自主控制权。世界肾脏日（WKD）联合指导委员会宣布2021年为“与肾病和谐共生”之年，旨在加强关于患者赋权和生活参与这一重要目标的教育并提高认识。这就需要制定和实施经过验证的患者报告结局指标，以评估和解决常规护理中生活参与方面的问题。监管机构可将其作为优质护理的一项指标予以支持，或用于支持药品和器械的标签声明。资助机构可针对解决患者优先事项的研究设立定向资助项目。肾病患者及其护理伙伴应感受到肾脏护理群体的共同努力所给予的支持，以便过上良好生活，包括在疫情期间。在肾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实施后，应促进对肾病患者进行早期检测，并延长其健康历程。2021年世界肾脏日继续呼吁提高各人群、专业人员和政策制定者对预防措施重要性的认识，这适用于发达国家和发展中国家。
