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Improvement of communication process and outcomes after newborn genetic screening

新生儿基因筛查后沟通过程和结果的改善

基本信息

批准号：
7837443
负责人：
Michael Henry Farrell
金额：
$ 33.69万
依托单位：
MEDICAL COLLEGE OF WISCONSIN
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：
2009-07-01 至 2011-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7837443
关键词：
Address Animal Welfare Anxiety Area Bibliography Categories Characteristics Cognitive Communication Confusion Counseling Country Critiques Cystic Fibrosis Data Disease Early identification Educational process of instructing Elements Enrollment Environment Environmental Impact Environmental Risk Factor Equation Equipment Ethics Evaluation Face Factor Analysis Family health status Frequencies Future Genetic Genetic Screening Genomics Goals Guidelines Healthcare Hemoglobinopathies IACUC Individual Infant International Intervention Interview Knowledge Lead Light Logistic Regressions Mails Manuscripts Measures Medical Methods Mind Minority Modeling Neonatal Screening Newborn Infant Nurse Practitioners Outcome Parents Participant Patient Care Patients Pattern Personal Communication Persons Physician Assistants Physicians Primary Health Care Principal Investigator Privacy Process Provider Public Health Published Comment Quality Indicator Recruitment Activity Regrets Reporting Research Research Ethics Committees Research Personnel Resources Risk Safety Sample Size Sampling Screening Result Screening procedure Series Services Sickle Cell Simulate Source Specificity Study Section Study models Surveys Telephone Telephone Interviews Testing Time Training Transcript Validation Vertebrates Wisconsin Work Writing abstracting authority base behavior change cohort communication behavior communication theory cost design ethical legal social implication experience expiration follow-up human subject inclusion criteria interest parental influence programs psychologic psychosocial rehearsal response skills theories trait validation studies willingness

项目摘要

Background: Many authors have raised ethical, legal, and social concerns about the use of screening tests that also identify genomic information not immediately relevant to a disease. Newborn screening identifies cystic fibrosis (CF) and sickle cell hemoglobinopathy (SCH) early, but at the cost of psychological harm that develops in a substantial minority of parents whose infants are found to be heterozygous for CF or SCH. Primary care providers' limited genetic knowledge and communication skills may then lead to disparities in communication outcomes. This project is intended to help public health to develop a mechanism for early identification and treatment of psychosocial problems that develop after newborn genetic screening. Aims: [Aim 1] To closely examine and clarify the communication experience of parents after newborn screening identifies an infant as a carrier for sickle cell or cystic fibrosis, including [1a] the frequency of ideal communication behaviors likely to be experienced in primary care, and [1b] knowledge, misconceptions, scores on Marteau's 6-item version of the Spielberger state-anxiety subscale and the vulnerable baby scale. [Aim 2] To investigate factors that may influence parents' psychosocial and cognitive outcomes after newborn screening identifies an infant as a carrier for sickle cell or cystic fibrosis, including [2a] the frequency of ideal communication behaviors likely to be experienced in primary care, [2b-c] parents' report about counseling from the primary care provider and other sources, and [2d] interaction effects with other factors such as parents' reported prior knowledge and individual characteristics of parents and providers. Methods: This project will be conducted under statutory authority of the Wisconsin Department of Health and Family Services. The study will recruit parents and primary care providers of infants found via newborn screening to be heterozygous for SCH or CF will be recruited using a series of mailings and telephone calls designed to maximize safety and respect for privacy. Investigators will (a) contact primary care providers and invite them to rehearse on tape what will be said to parents, and (b) conduct a telephone interview with parents 4 months later to ask about anxiety, misconceptions and other psychosocial problems. Interview transcripts will be abstracted to obtain process and outcome data using explicit-criteria methods from previous studies. Anonymous written surveys will be used to evaluate the interview process. Significance: It is hypothesized that a substantial minority of parents experience psychological or cognitive problems after newborn screening and that many primary care providers fail to adequately communicate screening results. This study may be able to shed better light on associations between these two problems, and also demonstrate a statewide mechanism for following up on psychosocial risks. Progress in this area may address many ethical concerns and generalize to other areas of communication in health care.

背景资料：许多作者已经提出了伦理，法律的，和社会关注的使用筛选测试，也确定基因组信息不直接相关的疾病。新生儿筛查早期发现囊性纤维化（CF）和镰状细胞血红蛋白病（SCH），但在心理伤害的发展，在相当少数的父母，其婴儿被发现是杂合子CF或SCH的成本。初级保健提供者的有限的遗传知识和沟通技巧，然后可能会导致沟通结果的差异。该项目旨在帮助公共卫生部门建立一种机制，以便及早发现和治疗新生儿遗传筛查后出现的心理社会问题。目的：[目的1]在新生儿筛查确定婴儿为镰状细胞或囊性纤维化携带者后，仔细检查并澄清父母的沟通经验，包括[1a]在初级保健中可能经历的理想沟通行为的频率，以及[1b]知识，误解，Marteau的6项版本Spielberger状态焦虑子量表和脆弱婴儿量表的评分。[Aim 2]调查新生儿筛查确定婴儿为镰状细胞或囊性纤维化携带者后可能影响父母心理社会和认知结果的因素，包括[2a]在初级保健中可能经历的理想沟通行为的频率，[2b-c]父母关于初级保健提供者和其他来源咨询的报告，和[2d]与其他因素的相互作用效应，如父母的报告先前的知识和父母和供应商的个人特征。方法：本项目将在威斯康星州卫生和家庭服务部的法定授权下进行。本研究将招募通过新生儿筛查发现为SCH或CF杂合子婴儿的父母和初级保健提供者，将通过一系列旨在最大限度地提高安全性和尊重隐私的邮件和电话招募。研究人员将（a）联系初级保健提供者，并邀请他们在磁带上排练将对父母说的话，（B）4个月后对父母进行电话采访，询问有关焦虑、误解和其他心理社会问题的情况。访谈记录将被提取，以获得过程和结果数据，使用明确的标准方法从以前的研究。将使用匿名书面调查来评估面试过程。重要性：据推测，相当少的父母经历新生儿筛查后的心理或认知问题，许多初级保健提供者未能充分沟通筛查结果。这项研究可能能够更好地揭示这两个问题之间的关联，也展示了一个全州范围内的心理社会风险跟进机制。在这方面的进展可能会解决许多伦理问题，并推广到其他领域的通信在医疗保健。