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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：
8465886
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/8465886
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 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 screening 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)：由于最近一种新的筛查技术-串联质谱仪的推广，国家新生儿筛查项目正在显著扩大。在这种情况下，正在筛查的疾病数量的急剧增加已经给医疗保健系统在与家庭的沟通以及在评估初步阳性新生儿筛查结果的过程中为婴儿组织和提供保健服务方面带来了挑战。目前，在评估过程中影响父母理解的因素以及这种理解可能对相关结果产生的影响(例如，父母焦虑、医疗保健利用率增加)方面，我们的理解存在根本差距。拟议的项目旨在探讨和审查在三个关键阶段中涉及的关键利益攸关方(父母、初级保健医生、临床遗传学家和国家新生儿筛查官员)关于新生儿筛查阳性结果的沟通的经验和偏好：关于初始阳性筛查的通知；后续测试和评估；以及父母对评估最终结果的通知。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。该项目最终将为在新生儿筛查结果呈阳性的评估期内组织和提供保健服务制定一个令人信服的执行计划。在这些研究阶段的职业发展活动将包括关于定性研究方法、高级调查方法和政策分析的正式培训，以及由一群敬业和有经验的导师提供的指导和指导。在拟议的研究项目结束时，候选人将成为组织和向新生儿筛查结果初步呈阳性的婴儿提供保健服务的专家，并将提交由调查员发起的赠款申请，以评估为提供这些服务而制定的执行计划。由于最近在新生儿筛查小组上检测的疾病数量不断增加，更好地了解为新生儿筛查结果初步阳性的婴儿组织和提供医疗服务的情况，是在州新生儿筛查计划内提供高质量服务的关键一步。

项目成果

期刊论文数量（20）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Family History Collection Practices: National Survey of Pediatric Primary Care Providers.

家族史收集实践：全国儿科初级保健提供者调查。

DOI：
10.1177/0009922817733693
发表时间：
2018
期刊：
Clinical pediatrics
影响因子：
1.6
作者：
Tarini,BethA;Gornick,MicheleC;Zikmund-Fisher,BrianJ;Saal,HowardM;Edmondson,Laurie;Uhlmann,WendyR
通讯作者：
Uhlmann,WendyR

Growing up in the genomic era: implications of whole-genome sequencing for children, families, and pediatric practice.

DOI：
10.1146/annurev-genom-091212-153425
发表时间：
2013
期刊：
Annual review of genomics and human genetics
影响因子：
8.7
作者：
Wade CH;Tarini BA;Wilfond BS
通讯作者：
Wilfond BS

Communicating with parents about newborn screening: the skill of eliciting unspoken emotions.

与父母沟通新生儿筛查：引发不言而喻的情绪的技巧。

DOI：
10.1001/archpediatrics.2011.767
发表时间：
2012
期刊：
Archives of pediatrics & adolescent medicine
影响因子：
0
作者：
Tarini,BethA
通讯作者：
Tarini,BethA

Primary Care Providers' Initial Evaluation of Children with Global Developmental Delay: A Clinical Vignette Study.

初级保健提供者对整体发育迟缓儿童的初步评估：临床小插图研究。

DOI：
10.1016/j.jpeds.2015.08.065
发表时间：
2015
期刊：
The Journal of pediatrics
影响因子：
0
作者：
Tarini,BethA;Zikmund-Fisher,BrianJ;Saal,HowardM;Edmondson,Laurie;Uhlmann,WendyR
通讯作者：
Uhlmann,WendyR

Blindness in Walnut Grove: how did Mary Ingalls lose her sight?

核桃林失明：玛丽·英格斯是如何失明的？