Family Education for Confirmed Newborn Screen

描述（由申请人提供）：新生儿筛查（NBS）是一项国家公共卫生倡议，旨在确定新生儿中的遗传或代谢疾病，如果不进行治疗，则与显著的发病率或死亡率相关。随着技术的进步，国家统计局的作用和范围正在迅速扩大。在这种扩大的同时，对确诊患有慢性病、有时危及生命的疾病的新生儿家庭的教育、情感和其他资源支持方面的差距也在扩大。NICHD新生儿筛查研究计划包括开发和测试创新干预措施和治疗方法以改善结果;提供者劳动力的教育;为父母和提供者开发和实施适当的信息和通信系统;以及赞助正在进行的研究和研究培训计划。为了响应这一呼吁，我们打算为通过国家统计局系统确定的先天性肾上腺增生症儿童的父母开发一个全面的、互动的DVD和基于网络的教育方案。虽然两种技术平台（DVD和互联网）都可以提供相当的教育内容（例如，具有动画的讲座视频剪辑、模拟与医疗保健专业人员成功互动的个人和家庭场景等），交互和内容定制的对比机会，以及通常观看每种技术的设置（即，作为电视机前的一个家庭与计算机前的一个用户），使得必须进行探索这些技术的最佳混合的试点工作。第一阶段的具体目标是：1）在DVD和互联网媒体上创建教育心理社会计划原型; 2）征求和接收关键利益相关者的反馈（即，有受影响儿童的家庭、卫生保健专业人员和国家NBS系统的代表），以告知产品开发; 3）进行需求评估，并确定将这种教育技术推广到非英语人群时需要考虑的问题;即，西班牙语家庭; 4）解决与家庭和医疗保健专业人员使用该技术相关的任何保密/合规问题，在此期间可能会披露个人身份信息;以及5）与国家NBS系统中的关键政府和其他利益相关者建立并保持合作关系，以促进对这种教育技术的接受和认可。公共卫生相关性：该项目的长期目标是开发、应用、测试、评估和改进一种利用现成技术的具有成本效益的患者教育和支持方法。如果成功的话，这种方法的发展将使年轻患者的家庭更加了解病情，并通过解决信息和情感支持需求来照顾孩子的健康。这种模式具有显着的商业化潜力，通过在扩大新生儿筛查确定的慢性疾病的全方位的患者教育计划的出版物。

DESCRIPTION (provided by applicant): Newborn screening (NBS) is a national public health initiative directed at identifying genetic or metabolic disorders in newborns which, if left untreated, are associated with significant morbidity or mortality. The role and scope of NBS is rapidly expanding given technological advances. Concurrent with this expansion is a widening gap in educational, emotional and other resource supports for families of newborns receiving confirmed diagnoses of chronic, sometimes life-threatening, conditions. The NICHD Research Initiative in Newborn Screening includes the development and testing of innovative interventions and treatments to improve outcomes; education of the provider workforce; development and implementation of appropriate information and communication systems for parents and providers; and sponsorship of ongoing research and research training programs. In response to this call, our intention is to develop a comprehensive, interactive DVD and web-based educational program, for parents of children born with a condition, congenital adrenal hyperplasia, identified through the NBS system. While both technology platforms (DVD and internet) can deliver comparable educational content (e.g., video clips of lectures with animation, scenes of individuals and families modeling successful interaction with healthcare professionals, etc.), the contrasting opportunities for interaction and tailoring of content, and the settings in which each technology is typically viewed (i.e., as a family in front of the television vs. a single user at the computer), makes it imperative that pilot work exploring the optimal blending of these technologies be conducted. Phase I Specific Aims are to: 1) create the educational psychosocial program prototype on DVD and internet media; 2) solicit and receive feedback from key stakeholders (i.e., families with affected children, health care professionals, and representatives of the national NBS system) to inform product development; 3) conduct a needs assessment and identify issues to consider when extending this educational technology to non-English speaking populations; i.e., Spanish-speaking families; 4) address any confidentiality/compliance issues related to the use of the technology by both families and healthcare professionals during which potentially personally identifying information is disclosed; and 5) establish and maintain partnerships with key government and other stakeholders in the national NBS system to facilitate acceptance and endorsement of this educational technology. Public Health Relevance: The long-term goal of this project is to develop, apply, test, evaluate, and refine a cost-effective approach to patient education and support that takes advantage of readily accessible technology. If successful, the development of this approach will enable the families of young patients to become more knowledgeable about the condition and competent in caring for their child's health by addressing both informational and emotional support needs. This model has significant potential for commercialization through the publication of patient education programs across the full spectrum of chronic medical conditions identified by expanded newborn screen.