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

• 批准号: 7754420
• 负责人: Michael Henry Farrell
• 金额: $ 41.27万
• 依托单位: MEDICAL COLLEGE OF WISCONSIN
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-02-04 至 2011-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7754420
• 关键词: Address; Anxiety; Area; Categories; Characteristics; Cognitive; Communication; Confusion; Counseling; Critiques; Cystic Fibrosis; Data; Disease; Early identification; Educational process of instructing; Elements; Enrollment; Environmental Risk Factor; Equation; Ethics; Evaluation; Face; Factor Analysis; Family health status; Frequencies; Future; Genetic; Genetic Screening; Genomics; Goals; Guidelines; Healthcare; Hemoglobinopathies; Individual; Infant; 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 Personnel; 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; Wisconsin; Work; Writing; abstracting; authority; base; behavior change; cohort; communication behavior; communication theory; cost; design; ethical legal social implication; experience; inclusion criteria; interest; parental influence; programs; psychologic; psychosocial; rehearsal; response; skills; theories; trait; validation studies; willingness

DESCRIPTION (provided by applicant): 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.

描述（由申请人提供）： 背景：许多作者对使用筛选测试提出了伦理、法律和社会方面的担忧，这些测试也可以识别与疾病不直接相关的基因组信息。新生儿筛查可及早发现囊性纤维化 (CF) 和镰状细胞血红蛋白病 (SCH)，但代价是，绝大多数婴儿被发现患有 CF 或 SCH 杂合子的父母都会遭受心理伤害。初级保健提供者有限的遗传知识和沟通技巧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，以早期识别和治疗新生儿基因筛查后出现的心理社会问题。目的：[目标 1] 仔细检查和澄清新生儿筛查确定婴儿为镰状细胞病或囊性纤维化携带者后父母的沟通体验，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 斯皮尔伯格状态焦虑量表 6 项版本和脆弱婴儿量表的得分。 [目标 2] 调查新生儿筛查确定婴儿为镰状细胞病或囊性纤维化携带者后可能影响父母心理和认知结果的因素，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，以及 [2d] 与其他因素（例如父母报告的先前知识和父母和父母的个人特征）的相互作用影响 提供商。方法：该项目将在威斯康星州健康和家庭服务部的法定授权下进行。该研究将招募通过新生儿筛查发现患有 SCH 或 CF 杂合子的婴儿的父母和初级保健提供者，将通过一系列邮件和电话来招募，旨在最大限度地提高安全性和尊重隐私。调查人员将 (a) 联系初级保健提供者并邀请他们在录音中排练对家长所说的话，以及 (b) 4 个月后对家长进行电话访谈，询问他们的焦虑、误解和其他心理社会问题。将使用先前研究中的明确标准方法提取访谈记录，以获得过程和结果数据。将使用匿名书面调查来评估访谈过程。意义：据推测，绝大多数父母在新生儿筛查后会出现心理或认知问题，并且许多初级保健提供者未能充分传达筛查结果。这项研究或许能够更好地揭示这两个问题之间的关联，并展示全州范围内跟踪心理社会风险的机制。这一领域的进展可能会解决许多伦理问题，并推广到医疗保健传播的其他领域。