FIRST WORDS Project: Estimating the Prevalence of ASD in a Prospective Sample

FIRST WORDS 项目：估计预期样本中 ASD 的患病率

• 批准号: 7167912
• 负责人: AMY M WETHERBY
• 金额: $ 12.5万
• 依托单位: FLORIDA STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-09-01 至 2008-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7167912
• 关键词: autism; behavioral /social science research tag; clinical research; cooperative study; early diagnosis; human subject; infant human (0-1 year); language development; longitudinal human study; mental disorder diagnosis; mental health epidemiology; middle childhood (6-11); preschool child (1-5); autism; behavioral /social science research tag; clinical research; cooperative study; early diagnosis; human subject; infant human (0-1 year); language development; longitudinal human study; mental disorder diagnosis; mental health epidemiology; middle childhood (6-11); preschool child (1-5)

DESCRIPTION (provided by applicant): Accurately estimating the prevalence of autism spectrum disorders (ASD) in early childhood is particularly challenging because many children are not diagnosed until school age. The major aim of this project is to estimate the prevalence of ASD in a prospective sample of children using a two-stage screening and referral process developed by the FIRST WORDS(r) Project. Children will be recruited from a general population sample of over 6,000 children who were screened with a broadband parent-report surveillance checklist between 6 and 24 months of age. An autism-specific interactive screening tool was videotaped on selected children. To date, we have identified 42 children from this prospective sample who were diagnosed with ASD at 3 years of age or older; 40 received a positive broadband screen and 41 a positive autism-specific screen. In order to estimate how many children with ASD may have been missed from this prospective sample, families of all children who completed the broadband screener will be mailed a brief follow-up questionnaire to inquire whether their child has been diagnosed with ASD or another developmental disability, is receiving special education services, or the parents are concerned that their child may have a developmental problem. Children flagged from this questionnaire will be invited for a diagnostic evaluation to confirm or rule out ASD. The following research objectives will be addressed: 1) to calculate sensitivity, specificity, positive predictive value, and negative predictive value for the broadband and autism-specific screening tools; 2) to compare the autism-specific interactive screening tool with a newly developed autism-specific parent-report screening tool on a subset of this sample; and 3) to estimate the prevalence of autism and the broader ASD and describe demographic and developmental characteristics of this prospective sample, which includes about 1/4th the birth rate of a small urban and surrounding rural communities. Focus groups will be conducted with parents and professionals to seek input on how to improve the screening process and offer better ways to share information about initial diagnosis and access to services. The expected outcomes of this study will: 1) document the effectiveness of a community-based screening model to estimate the prevalence of ASD in early childhood; and 2) offer methods and materials to support families and professionals participating in an ASD surveillance system and to increase community and public health awareness of ASD.

描述（由申请人提供）：准确估计儿童早期自闭症谱系障碍（ASD）的患病率尤其具有挑战性，因为许多儿童直到学龄才被诊断出。该项目的主要目的是使用第一个单词（R）项目开发的两阶段筛选和转诊过程在前瞻性儿童样本中估计ASD的普遍性。将从6,000多名儿童的普通人群样本中招募儿童，这些儿童在6至24个月大的范围内被宽带父母报告监视清单筛选。在选定的孩子上录制了一种自闭症特定的互动筛查工具。迄今为止，我们已经确定了来自该预期样本的42名儿童，他们在3岁或以上被诊断出患有ASD； 40收到了正宽带屏幕，41个阳性自闭症特异性屏幕。为了估计该预期样本中可能错过了多少个ASD的儿童，所有完成宽带筛查者的孩子的家庭将被邮寄给简短的后续调查表，以询问他们的孩子是否已被诊断出患有ASD或其他发育残疾，正在接受特殊教育服务，或者父母担心孩子可能有发展问题。从该问卷中标记的孩子将被邀请进行诊断评估，以确认或排除ASD。将解决以下研究目标：1）计算宽带和特定于自闭症的筛选工具的灵敏度，特异性，积极的预测价值和负预测价值； 2）将特定于自闭症的交互式筛选工具与本样本子集上的新开发的自闭症父母报告筛选工具进行比较； 3）为了估计自闭症的流行和更广泛的ASD的流行，并描述了该预期样本的人口统计和发展特征，其中包括大约1/4的小城市和周边农村社区的出生率。焦点小组将与父母和专业人员一起进行，以寻求如何改善筛查过程，并提供更好的方法来分享有关初始诊断和访问服务的信息。这项研究的预期结果将：1）记录基于社区的筛查模型的有效性，以估计童年时期ASD的患病率； 2）提供方法和材料，以支持参加ASD监视系统的家庭和专业人员，并提高社区和公共卫生对ASD的认识。