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:7860443
- 负责人:
- 金额:$ 13.23万
- 依托单位:
- 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:
- 关键词:AnxietyApplications GrantsAreaBehaviorCaringCessation of lifeCharacteristicsChildChild BehaviorChild health careChildhoodClinicalCommunicationComplexConsultationsCoupledDataData AnalysesDevelopmentDiffusionDiseaseEnvironmentEvaluationEvaluation ReportsFacultyFamilyFamily CharacteristicsFunctional disorderFutureGeneticGenetic ScreeningGoalsHealth PersonnelHealth Services ResearchHealth StatusHealthcareHealthcare SystemsInfantInfant CareKnowledgeLeadLinkMedicalMental RetardationMentorsMentorshipMichiganNamesNatural HistoryNeonatal ScreeningNorth CarolinaNotificationOutcomeParent-Child RelationsParental NotificationParentsPerceptionPhasePhysiciansPoliciesPolicy AnalysisPrimary Care PhysicianPrimary Health CarePrincipal InvestigatorProceduresProcessProviderPublic PolicyQualitative ResearchReportingResearchResearch MethodologyResearch PersonnelResearch Project GrantsSamplingScreening ResultScreening procedureSelf EfficacyServicesSocial supportSocioeconomic StatusSpecialistStagingSurvey MethodologySystemTechnologyTestingTimeTrainingcare deliverycareer developmenteffective therapyevaluation/testingexperiencefollow-uphealth care deliveryhealth care service utilizationimprovedmedical specialtiesmultidisciplinaryoutcome forecastparental influencepopulation basedpreferenceprogramsresearch clinical testingskillstandem 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的扩散,国家新生儿筛查计划正处于重大扩展之中。在这种情况下,正在筛查的疾病数量急剧增加,已经在与家庭沟通方面给医疗保健系统带来了挑战,并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,我们对影响父母在评估过程中理解的因素以及这种理解可能对相关结果的影响(例如,父母焦虑,增加医疗保健利用率)。拟议的项目旨在探索和研究的经验和偏好,沟通有关积极的新生儿筛查结果的关键利益相关者(父母,初级保健医生,临床遗传学家,和国家新生儿筛查官员)参与三个关键阶段:通知初步积极的屏幕;后续测试和评估;和家长通知的最终结果的评估。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。该项目最终将制定一项令人信服的实施计划,在新生儿筛查结果呈阳性的评估期内组织和提供医疗服务。在这些研究阶段的职业发展活动将包括定性研究方法,先进的调查方法和政策分析的正式培训,沿着来自专门和经验丰富的导师小组的指导和方向。在拟议的研究项目结束时,候选人将成为组织和提供医疗保健服务的专家,为新生儿筛查结果初步呈阳性的婴儿,并将提交一份由卫生部发起的资助申请,以评估为提供这些服务而制定的实施计划。 由于最近,并继续,在新生儿筛查面板上测试的疾病数量增加,更好地了解组织和提供医疗服务的婴儿与最初的积极新生儿筛查结果是国家新生儿筛查计划内提供高质量的服务的重要一步。
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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Beth A Tarini其他文献
Beth A Tarini的其他文献
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{{ truncateString('Beth A Tarini', 18)}}的其他基金
Unresolved Issues in Newborn Screening: Quantifying the Harms of a False Positive Result
新生儿筛查中未解决的问题:量化假阳性结果的危害
- 批准号:
10221751 - 财政年份:2018
- 资助金额:
$ 13.23万 - 项目类别:
Unresolved Issues in Newborn Screening: Quantifying the Harms of a False Positive Result
新生儿筛查中未解决的问题:量化假阳性结果的危害
- 批准号:
10440414 - 财政年份:2018
- 资助金额:
$ 13.23万 - 项目类别:
Unresolved Issues in Newborn Screening: Quantifying the Harms of a False Positive Result
新生儿筛查中未解决的问题:量化假阳性结果的危害
- 批准号:
9975202 - 财政年份:2018
- 资助金额:
$ 13.23万 - 项目类别:
Unresolved Issues in Newborn Screening: Quantifying the Harms of a False Positive Result
新生儿筛查中未解决的问题:量化假阳性结果的危害
- 批准号:
9497997 - 财政年份:2018
- 资助金额:
$ 13.23万 - 项目类别:
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
- 批准号:
8079062 - 财政年份:2009
- 资助金额:
$ 13.23万 - 项目类别:
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
- 批准号:
8465886 - 财政年份:2009
- 资助金额:
$ 13.23万 - 项目类别:
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
- 批准号:
8289354 - 财政年份:2009
- 资助金额:
$ 13.23万 - 项目类别:
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
- 批准号:
7589012 - 财政年份:2009
- 资助金额:
$ 13.23万 - 项目类别: