Dunn Laurie, Gordon Katherine, Sein Julia, Ross Kimberly
Department of Pediatrics, University of Miami Miller School of Medicine, Miami, FL, USA.
South Med J. 2012 Apr;105(4):218-22. doi: 10.1097/SMJ.0b013e31824f8220.
Assess knowledge, attitude, and satisfaction with the newborn screening (NBS) system among pediatric public health leaders in the state of Florida.
Online surveys and open-ended telephone interviews were administered to 10 county medical directors for a state-funded program that oversees NBS. Survey questions examined basic knowledge regarding NBS, views on provider and parent access to NBS information, and recommendations for improving the information distribution system.
Providers learn about NBS from the American Academy of Pediatrics, the Department of Health, and continuing medical education; however, 80% of providers were concerned about receiving inadequate information. Thirty percent of the providers surveyed reported that it takes >14 days to receive NBS results. The majority (80%) were concerned that parents may not receive adequate information about their infant's condition, treatment, or prognosis. No provider reported being confident in his or her ability to assess how well a parent understands a positive NBS result. Eighty percent of those surveyed believe that the pediatric primary care provider is responsible for providing NBS information to parents and almost all of the providers (90%) believed parents should be notified of normal NBS results.
This study indicates dissatisfaction with and confusion about NBS. Addressing this problem requires action at the levels of medical education, clinical care, health policy, and information systems.
评估佛罗里达州儿科公共卫生负责人对新生儿筛查（NBS）系统的知识掌握情况、态度及满意度。
对10位负责一项由州政府资助的监管NBS项目的县医疗主任进行了在线调查和开放式电话访谈。调查问题涉及有关NBS的基本知识、对医护人员及家长获取NBS信息的看法，以及对改善信息传播系统的建议。
医护人员从美国儿科学会、卫生部及继续医学教育中了解NBS；然而，80%的医护人员担心信息获取不足。30%的接受调查的医护人员报告称，收到NBS结果需要超过14天。大多数人（8）担心家长可能无法获得关于其婴儿病情、治疗或预后的充分信息。没有医护人员报告对自己评估家长对NBS阳性结果理解程度的能力有信心。80%的受访者认为儿科初级保健提供者有责任向家长提供NBS信息，几乎所有医护人员（90%）认为应将NBS正常结果告知家长。
本研究表明对NBS存在不满和困惑。解决这一问题需要在医学教育、临床护理、卫生政策和信息系统层面采取行动。
