Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry, South Australia Health and Medical Research Institute, Adelaide, South Australia, Australia.
Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Nephrol Dial Transplant. 2024 Sep 5;39(Supplement_2):ii49-ii55. doi: 10.1093/ndt/gfae127.
Data monitoring and surveillance systems are the cornerstone for governance and regulation, planning, and policy development for chronic disease care. Our study aims to evaluate health systems capacity for data monitoring and surveillance for kidney care.
We leveraged data from the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA), an international survey of stakeholders (clinicians, policymakers and patient advocates) from 167 countries conducted between July and September 2022. ISN-GKHA contains data on availability and types of kidney registries, the spectrum of their coverage, as well as data on national policies for kidney disease identification.
Overall, 167 countries responded to the survey, representing 97.4% of the global population. Information systems in forms of registries for dialysis care were available in 63% (n = 102/162) of countries, followed by kidney transplant registries (58%; n = 94/162), and registries for non-dialysis chronic kidney disease (19%; n = 31/162) and acute kidney injury (9%; n = 14/162). Participation in dialysis registries was mandatory in 57% (n = 58) of countries; however, in more than half of countries in Africa (58%; n = 7), Eastern and Central Europe (67%; n = 10), and South Asia (100%; n = 2), participation was voluntary. The least-reported performance measures in dialysis registries were hospitalization (36%; n = 37) and quality of life (24%; n = 24).
The variability of health information systems and early identification systems for kidney disease across countries and world regions warrants a global framework for prioritizing the development of these systems.
数据监测和监控系统是慢性病管理的治理、监管、规划和政策制定的基石。我们的研究旨在评估肾脏护理的数据监测和监控的卫生系统能力。
我们利用了国际肾脏病学会全球肾脏健康地图集（ISN-GKHA）第三次迭代的数据，这是一项针对来自 167 个国家的利益相关者（临床医生、政策制定者和患者权益倡导者）的国际调查，于 2022 年 7 月至 9 月进行。ISN-GKHA 包含了关于肾脏登记处的可用性和类型、其覆盖范围的范围以及国家肾脏病识别政策的数据。
共有 167 个国家对调查做出了回应，占全球人口的 97.4%。以透析护理登记处形式存在的信息系统在 63%（n=102/162）的国家中可用，其次是肾脏移植登记处（58%；n=94/162）、非透析慢性肾脏病登记处（19%；n=31/162）和急性肾损伤登记处（9%；n=14/162）。57%（n=58）的国家强制参与透析登记处；然而，在非洲（58%；n=7）、东欧和中欧（67%；n=10）以及南亚（100%；n=2）的一半以上国家，参与是自愿的。在透析登记处报告的最少绩效指标是住院治疗（36%；n=37）和生活质量（24%；n=24）。
各国和世界各地区在卫生信息系统和肾脏疾病早期识别系统方面存在差异，这需要一个全球框架来优先发展这些系统。
