Department of General Paediatrics, Haematology, Oncology, University Children's Hospital Tuebingen, Tuebingen, Germany.
Curr Opin Pulm Med. 2011 Nov;17(6):473-7. doi: 10.1097/MCP.0b013e32834b6b72.
Cystic fibrosis (CF) patient registries have become an important epidemiological tool for demography, networking, and quality management. This review describes recent developments in patient registries, outcome research, and pilot projects in quality improvement.
National and international CF registry efforts have been producing consolidated data. Classical outcome indicators describing nutritional status and lung function are now being used in a more precise way, based on body mass index percentiles and longitudinal data. Projects involving single centers and quality groups, such as the German benchmarking project, have been showing that quality improvement is possible and that negative developments do not necessarily have to be accepted in CF.
CF provides a model of the link between healthcare delivery and outcomes in patients. CF registry data can be used to improve quality in CF healthcare. Quality improvement is a continuous endeavor involving the reinforcement of standards and programs as well as individual attitudes and soft skills. One particularly powerful technique is benchmarking, that is, learning from the best.
囊性纤维化 (CF) 患者登记处已成为人口统计学、网络和质量管理的重要流行病学工具。本综述描述了患者登记处、结果研究和质量改进试点项目的最新进展。
国家和国际 CF 登记处的工作一直在产生综合数据。基于体重指数百分位数和纵向数据，现在正在更精确地使用描述营养状况和肺功能的经典结果指标。涉及单个中心和质量小组的项目，如德国基准项目，已经表明质量改进是可能的，CF 中不一定必须接受负面发展。
CF 提供了医疗保健提供与患者结果之间联系的模型。CF 登记处数据可用于改善 CF 医疗保健质量。质量改进是一项持续的努力，涉及加强标准和计划以及个人态度和软技能。一个特别强大的技术是基准测试，即从最好的学习。
