McClain Monica R, Hokanson John S, Grazel Regina, Van Naarden Braun Kim, Garg Lorraine F, Morris Michelle R, Moline Kathleen, Urquhart Keri, Nance Amy, Randall Harper, Sontag Marci K
Institute on Disability, University of New Hampshire, 10 West Edge Drive, Suite 101, Durham, NH, 03824, USA.
University of Wisconsin-Madison, Madison, WI, USA.
Matern Child Health J. 2017 Jun;21(6):1240-1249. doi: 10.1007/s10995-017-2273-4.
Introduction The purpose of this article is to present the collective experiences of six federally-funded critical congenital heart disease (CCHD) newborn screening implementation projects to assist federal and state policy makers and public health to implement CCHD screening. Methods A qualitative assessment and summary from six demonstration project grantees and other state representatives involved in the implementation of CCHD screening programs are presented in the following areas: legislation, provider and family education, screening algorithms and interpretation, data collection and quality improvement, telemedicine, home and rural births, and neonatal intensive care unit populations. Results The most common challenges to implementation include: lack of uniform legislative and statutory mandates for screening programs, lack of funding/resources, difficulty in screening algorithm interpretation, limited availability of pediatric echocardiography, and integrating data collection and reporting with existing newborn screening systems. Identified solutions include: programs should consider integrating third party insurers and other partners early in the legislative/statutory process; development of visual tools and language modification to assist in the interpretation of algorithms, training programs for adult sonographers to perform neonatal echocardiography, building upon existing newborn screening systems, and using automated data transfer mechanisms. Discussion Continued and expanded surveillance, research, prevention and education efforts are needed to inform screening programs, with an aim to reduce morbidity, mortality and other adverse consequences for individuals and families affected by CCHD.
引言 本文旨在介绍六个由联邦政府资助的危重型先天性心脏病（CCHD）新生儿筛查实施项目的集体经验，以协助联邦和州政策制定者及公共卫生部门实施CCHD筛查。方法 以下方面呈现了对六个示范项目受资助者及参与CCHD筛查项目实施的其他州代表的定性评估和总结：立法、医护人员和家庭教育、筛查算法及解读、数据收集与质量改进、远程医疗、家庭分娩和农村分娩以及新生儿重症监护病房人群。结果 实施过程中最常见的挑战包括：筛查项目缺乏统一的立法和法定授权、资金/资源短缺、筛查算法解读困难、儿科超声心动图检查的可及性有限，以及将数据收集和报告与现有的新生儿筛查系统整合。已确定的解决方案包括：项目应在立法/法定程序早期考虑整合第三方保险公司及其他合作伙伴；开发视觉工具并修改语言以协助算法解读，为成人超声检查技师开展新生儿超声心动图检查培训项目，在现有新生儿筛查系统基础上进行建设，并使用自动数据传输机制。讨论 需要持续并扩大监测、研究、预防和教育工作，为筛查项目提供信息，以降低受CCHD影响的个人和家庭的发病率、死亡率及其他不良后果。
