Kalantar-Zadeh Kamyar, Li Philip Kam-Tao, 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
Department of Medicine and Therapeutics, Carol and Richard Yu PD Research Centre, Prince of Wales Hospital, Chinese University of Hong Kong, Hong Kong.
Iran J Kidney Dis. 2021 Mar;15(2):74-81.
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 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 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 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）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或朋友，可能有助于减轻与CKD相关症状的负担和后果，从而使他们能够参与生活。有必要扩大对肾病患者良好生活以及重新融入生活的关注，包括强调患者的自我掌控。世界肾脏日（WKD）联合指导委员会宣布2021年为“与肾病共筑美好生活”年，以努力加强对患者赋权和生活参与这一重要目标的教育和认识。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的各个方面。监管机构可将其作为优质护理的一项指标，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到通过肾脏护理群体的共同努力，包括在疫情期间，能够获得支持从而过上美好生活。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，应促进对肾病患者的早期检测，并延长其健康进程。2021年世界肾脏日继续呼吁提高全体人群、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。
