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Improving Healthcare Delivery for Infants with Positive Newborn Screening Results

改善新生儿筛查结果呈阳性的婴儿的医疗保健服务

基本信息

批准号：
8079062
负责人：
Beth A Tarini
金额：
$ 13.23万
依托单位：
UNIVERSITY OF MICHIGAN AT ANN ARBOR
依托单位国家：
美国
项目类别：
财政年份：
2009
资助国家：
美国
起止时间：
2009-06-05 至 2014-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8079062
关键词：
Anxiety Applications Grants Area Behavior Caring Cessation of life Characteristics Child Child Behavior Child health care Childhood Clinical Communication Complex Consultations Coupled Data Data Analyses Development Diffusion Disease Environment Evaluation Evaluation Reports Faculty Family Family Characteristics Functional disorder Future Genetic Genetic Screening Goals Health Personnel Health Services Research Health Status Healthcare Healthcare Systems Infant Knowledge Lead Link Medical Mental Retardation Mentors Mentorship Michigan Names Natural History Neonatal Screening North Carolina Notification Outcome Parent-Child Relations Parental Notification Parents Perception Phase Physicians Policies Policy Analysis Primary Care Physician Primary Health Care Principal Investigator Procedures Process Provider Public Policy Qualitative Research Reporting Research Research Methodology Research Personnel Research Project Grants Sampling Screening Result Screening procedure Self Efficacy Services Social support Socioeconomic Status Specialist Staging Survey Methodology System Technology Testing Time Training care delivery career development effective therapy evaluation/testing experience follow-up health care delivery health care service utilization improved medical specialties multidisciplinary outcome forecast parental influence population based preference programs research clinical testing skills tandem mass spectrometry

项目摘要

DESCRIPTION (provided by applicant): State newborn screening programs are in the midst of a significant expansion due to the recent diffusion of a new screening technology, tandem mass spectrometry. In this context, a dramatic increase in the number of disorders being screened is already creating challenges for the healthcare system in terms of communication with families, and the organization and delivery of healthcare services for infants during the process of evaluating initial positive newborn screening results. Currently, there exists a fundamental gap in our understanding of the factors that influence parental understanding during this evaluation process and the impact this understanding may have on related outcomes (e.g., parental anxiety, increased healthcare utilization). The proposed project aims to explore and examine the experiences and preferences regarding communication about positive newborn screening results of key stakeholders (parents, primary care physicians, clinical geneticists, and state newborn screening officials) involved in the three key stages: notification about the initial positive screen; follow-up testing and evaluation; and parental notification of the final results of the evaluation. The project will be conducted in Michigan and North Carolina, two states with expanded newborn screening. The project will culminate in the development of a cogent implementation plan for the organization and delivery of healthcare services within this evaluation period of positive newborn screening results. Career development activities during these phases of research will include formal training in qualitative research methods, advanced survey methodology, and policy analysis, along with guidance and direction from a panel of dedicated and experienced mentors. By the end of the proposed research project, the candidate will be an expert in the organization and delivery of healthcare services to infants with initial positive newborn screening results and will submit an investigator-initiated grant application to evaluate the implementation plan developed for the delivery of these services. Due to the recent, and continued, increase in the number of disorders tested on newborn screening panels, a greater understanding of the organization and delivery of healthcare services to infants with initial positive newborn screening results is an essential step towards provision of high quality services within state newborn screening programs.

描述（由申请人提供）：由于最近新的筛查技术——串联质谱法的普及，州新生儿筛查计划正在显着扩展。在这种情况下，筛查疾病数量的急剧增加已经给医疗保健系统带来了挑战，包括与家人的沟通以及在评估初始阳性新生儿筛查结果的过程中为婴儿组织和提供医疗保健服务。目前，我们对评估过程中影响家长理解的因素以及这种理解可能对相关结果（例如家长焦虑、增加医疗保健利用率）的影响的理解存在根本差距。拟议项目旨在探索和检查涉及三个关键阶段的主要利益相关者（父母、初级保健医生、临床遗传学家和州新生儿筛查官员）关于新生儿阳性筛查结果沟通的经验和偏好：关于初始阳性筛查的通知；后续测试和评估；并将评估的最终结果通知家长。该项目将在密歇根州和北卡罗来纳州进行，这两个州扩大了新生儿筛查范围。该项目最终将制定一项令人信服的实施计划，以便在新生儿筛查结果呈阳性的评估期内组织和提供医疗保健服务。这些研究阶段的职业发展活动将包括定性研究方法、高级调查方法和政策分析方面的正式培训，以及由敬业且经验丰富的导师小组提供的指导和指导。在拟议的研究项目结束时，候选人将成为为初步新生儿筛查结果呈阳性的婴儿组织和提供医疗保健服务的专家，并将提交研究者发起的拨款申请，以评估为提供这些服务而制定的实施计划。由于最近新生儿筛查小组测试的疾病数量持续增加，更好地了解为新生儿筛查结果呈阳性的婴儿提供的医疗保健服务的组织和提供是在州新生儿筛查计划内提供高质量服务的重要一步。