Understanding the Delay in the Diagnosis of Autism

了解自闭症诊断的延迟

• 批准号: 6874605
• 负责人: David S Mandell
• 金额: $ 12.97万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-04-03 至 2010-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6874605
• 关键词: autism; behavioral /social science research tag; child mental health service; clinical research; decision making; diagnosis quality /standard; early diagnosis; family structure /dynamics; health care service utilization; health surveys; human subject; interview; longitudinal human study; mental disorder diagnosis; neuropsychological tests; preschool child (1-5); social support network

DESCRIPTION (provided by applicant): This application for an NIMH Mentored Research Scientist Career Development (K01) award seeks support to develop a program of research related to understanding the pathways and processes by which children with autism are screened, diagnosed and enter treatment. As part of the education plan, the PI will: 1) Increase his understanding of the presentation, diagnosis of and treatments for autism; 2) Increase his knowledge of different systems through which services for children with autism are provided; 3) Learn about the epistemologies that informs professionals' and families' understanding of autism by promoting interaction with families of children with autism and the professionals who come into contact with them; 4) Improve his knowledge of related fields such as neuropsychology, decision-making and communication; 5) Gain additional research skills to collect and analyze primary data about complex, multilayered issues; and 6) Acquire the skills associated with the development of interventions. A three-phase study that builds upon a federally funded prevalence study is proposed as part of this career development award. In Phase I, children with autism will be identified using medical and school records. Information from chart reviews of sources will be used to identify factors associated with the age at which children with autism are diagnosed. Phase II will sample families based on factors found in Phase I to be associated with age of diagnosis. Through semi-structured interviews, these families will be asked to describe their experiences related to their children's autism, what precipitated their concerns, and experiences related to getting screened, diagnosed and treated. Models and methods developed in Phases I and II will inform data collection efforts in Phase III. Phase III will enroll families whose children have recently screened positive for autism. Both quantitative and qualitative data will be collected from families who will be interviewed near the time their child is screened. Parents of children who are subsequently diagnosed with autism will be interviewed again at that time, and also 12 months later. Data will be gathered on stress, sources of support, and their decisions about whether and how to engage in treatment. In addition to acting as a pilot for the methods and instruments used in Phase III, Phases I and II will help the PI develop skills associated with mixed methods studies that will be applied to prospective data collection, analysis and interpretation. It is anticipated that as a result of this research, interventions will be developed that decrease the age at which children with autism receive the diagnosis and enter treatment. In addition, the results from this study may inform our understanding of factors affecting the early and appropriate diagnosis of other psychiatric and developmental disorders of childhood, leading to the development of broader interventions to expedite appropriate diagnosis.

描述（由申请人提供）：NIMH指导研究科学家职业发展（K01）奖的申请寻求支持，以制定与了解自闭症儿童被筛选，诊断和进入治疗的途径和过程有关的研究计划。作为教育计划的一部分，PI将：1）提高他对自闭症的表现，诊断和治疗方法的理解； 2）增加他对自闭症儿童服务的不同系统的了解； 3）了解通过促进与自闭症儿童的家庭以及与他们接触的专业人员的互动来了解自闭症的认识论； 4）提高他对相关领域的了解，例如神经心理学，决策和沟通； 5）获得额外的研究技能，以收集和分析有关复杂，多层问题的主要数据； 6）获得与干预措施发展相关的技能。 提出了一项以联邦资助的患病率研究为基础的三相研究，作为该职业发展奖的一部分。在第一阶段，将使用医学和学校记录确定自闭症儿童。来自图表审查的信息将用于确定与自闭症儿童诊断的年龄相关的因素。第二阶段将根据与诊断年龄相关的第一阶段的因素采样家族。通过半结构化的访谈，将要求这些家庭描述他们与孩子的自闭症有关的经历，引起他们的关注以及与接受筛查，诊断和治疗有关的经验。在第I和II阶段开发的模型和方法将在第三阶段收集数据收集工作。第三阶段将招募孩子最近对自闭症呈现阳性的家庭。定量数据和定性数据都将从家庭中收集，这些家庭将在孩子筛选时接受采访。随后被诊断出患有自闭症的孩子的父母将在当时以及12个月后再次接受采访。数据将收集有关压力，支持来源以及他们关于是否以及如何进行治疗的决定。除了作为第三阶段使用的方法和工具的试点外，第I和II阶段还将帮助PI发展与混合方法研究相关的技能，这些技能将应用于预期的数据收集，分析和解释。 可以预计，由于这项研究，将制定干预措施，以降低自闭症儿童接受诊断并进行治疗的年龄。此外，这项研究的结果可能会使我们对影响童年其他精神病和发育障碍的早期和适当诊断的因素的理解，从而导致更广泛的干预措施加快适当的诊断。