Quality of Communication after Newborn Genetic Screening

新生儿基因筛查后的沟通质量

• 批准号: 6580811
• 负责人: Michael Henry Farrell
• 金额: $ 11.58万
• 依托单位: YALE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-07-01 至 2004-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6580811
• 关键词: attitude; child health care personnel; clinical research; communication; comprehension; cystic fibrosis; ethics; family genetics; focus groups; genetic disorder diagnosis; genetic screening; genetic susceptibility; human subject; newborn human (0-6 weeks); physicians; sickle cell anemia; statistics /biometry

DESCRIPTION (provided by applicant): Background: Newborn screening tests identify congenital diseases such as Cystic Fibrosis (CF) and Sickle Cell Hemoglobinopathy (SCH) early, but ethical concerns about comprehension and psychosocial complications ("outcomes") after heterozygous results may delay implementation of new test technologies such as from the Human Genome Project. Physicians' limited genetic knowledge and communication skills may lead to disparities in communication outcomes, especially in families with socioeconomic barriers or limited access to care. Ethics research projects should study communication services during the design of systematic programs to assess and improve communication "quality" and "outcomes" on a population scale. Specific Aims: (1) To identify attitudes and expectations for communication services among parents after positive newborn screening for CF or SCH. (2) To evaluate communication quality/competence of pediatricians before and after a randomized trial of an audit-and-feedback-style communication quality assurance intervention. (3) To identify incidence and risk factors for adverse communication outcomes after screening for CF/SCH, and determine whether feedback/support to physicians will improve outcomes. Setting/Participants: Parents of infants in New York and Wisconsin with positive screens for CF/SCH. Research Plan: The project will include (1) a targeted focus group study of parents' attitudes about communication services after newborn screening, (2) a telephone study to assess (audit) communication quality/competence and give feedback to physicians, and (3) a survey of parents of CF- and SCH-heterozygous infants to determine risk factors for poor comprehension and psychosocial outcomes. Career Development Plan: The principal investigator's goal is to become an independent investigator, focusing on ways to assess and improve the quality and outcomes of communication after newborn genetic screening. He will work closely with a team of mentors, advisors, and collaborators, and pursue a master's degree in Communication Sciences and a Certificate in Bioethics. Significance: It is hypothesized that communication quality/competence and outcomes vary greatly after newborn screening, but can be improved by audit and feedback. Progress in this area will generalize to other areas of communication and help streamline the implementation of new genetic testing technology.

描述（由申请人提供）： 背景：新生儿筛查测试可早期识别囊性纤维化 (CF) 和镰状细胞血红蛋白病 (SCH) 等先天性疾病，但杂合子结果后对理解和心理社会并发症（“结果”）的伦理担忧可能会延迟实施新的测试技术，例如来自人类基因组计划的技术。医生有限的遗传知识和沟通技巧可能会导致沟通结果的差异，特别是在存在社会经济障碍或获得护理机会有限的家庭中。伦理研究项目应在设计系统计划期间研究传播服务，以评估和改善人口规模的传播“质量”和“结果”。 具体目标： (1) 确定新生儿 CF 或 SCH 筛查阳性后家长对沟通服务的态度和期望。 (2) 在审计和反馈式沟通质量保证干预措施的随机试验之前和之后评估儿科医生的沟通质量/能力。 (3) 确定 CF/SCH 筛查后不良沟通结果的发生率和危险因素，并确定对医生的反馈/支持是否会改善结果。地点/参与者：纽约和威斯康星州 CF/SCH 筛查呈阳性的婴儿父母。研究计划：该项目将包括 (1) 对新生儿筛查后父母对沟通服务的态度进行有针对性的焦点小组研究，(2) 评估（审核）沟通质量/能力并向医生提供反馈的电话研究，以及 (3 ）对 CF 和 SCH 杂合子婴儿的父母进行的调查，以确定理解力和社会心理结果不佳的危险因素。职业发展计划：主要研究者的目标是成为一名独立研究者，重点研究评估和改善新生儿基因筛查后沟通质量和结果的方法。他将与导师、顾问和合作者团队密切合作，攻读传播科学硕士学位和生物伦理学证书。意义：据推测，新生儿筛查后的沟通质量/能力和结果差异很大，但可以通过审核和反馈来改善。这一领域的进展将推广到其他交流领域，并有助于简化新基因检测技术的实施。