Addressing systemic health disparities in early ASD identification and treatment

解决自闭症谱系障碍早期识别和治疗中的系统性健康差异

• 批准号: 9090150
• 负责人: Alice S. Carter
• 金额: $ 77.14万
• 依托单位: UNIVERSITY OF MASSACHUSETTS BOSTON
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-08-25 至 2019-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9090150
• 关键词: Address; Adult; Affect; Age; Agreement; Autistic Disorder; Awareness; Behavioral; Boston; CCL4 gene; Caring; Centers for Disease Control and Prevention (U.S.); Child; Child health care; Childhood; Cities; Clinical; Collaborations; Data; Developmental Disabilities; Diagnosis; Diagnostic Services; Early Diagnosis; Early Intervention; Early identification; Early treatment; Economics; Engineering; English Learner; Enrollment; Ensure; Ethnic Origin; Evaluation; Experimental Designs; Family; Feedback; Focus Groups; Funding; Future; Goals; Health; Health Resources; Health Services Accessibility; Health Services Administration; Healthcare Systems; High Prevalence; Improve Access; Individual; Intervention; Knowledge; Language; Learning; Life; Massachusetts; Outcome; Parents; Participant; Pediatrics; Phase; Poverty; Provider; Public Health; Qualifying; Qualitative Methods; Quality of life; Race; Reporting; Research; Risk; Risk Assessment; Services; Site; Special Education; Staging; Surveys; Symptoms; System; Testing; Theoretical model; Underserved Population; Universities; Visit; Work; autism spectrum disorder; collaborative care; cost; court; design; developmental psychology; disorder prevention; disparity reduction; ethnic minority population; experience; health disparity; improved; inferential statistics; intervention effect; intervention program; models and simulation; motivational enhancement therapy; novel; outreach; pediatrician; primary outcome; racial and ethnic; screening; shared decision making; social

DESCRIPTION (provided by applicant): The goal of the proposed work is to implement a system-level intervention to (a) improve early detection of autism spectrum disorders (ASD) and (b) increase early access to autism specific early intervention services, especially for children who often are not given the known benefits of early intervention services. The proposed study builds on a funded multi-stage screening study that is currently being implemented in 3 Early Intervention programs serving children in the Circle of Promise, a Boston region with high social/economic risk and comprised of a high percentage of children from racial/ethnic minority populations, English language learners, or living in poverty. ASD Rates are increasing in the U.S., with recent estimates indicating that 1 in 88 children have ASD. Early diagnosis and intervention are crucial to ensuring optimal long-term outcomes; yet significant disparities exist in rates and age of diagnosis. Children in the above groups are less likely to be diagnosed and are diagnosed 1-2 years later than White, non-poor, English speaking children. This delay limits access to autism-specific early treatments. Timely identification and treatment requires at least two steps: 1) knowing and identifying the early signs of ASD, and 2) acting early. Pediatricians, parents, and EI providers must decide whether a child is showing enough signs to justify further assessment or treatment, or whether the child is at low enough risk to forego immediate action. Thus, acting early requires the about groups to evaluate the early signs and choose a yes/no course of action, which we refer to as a clinical threshold. We believe that early identification and access to care can be improved both by increasing knowledge of the early signs of ASD and by influencing these decision thresholds regarding when to screen, assess, and refer to ASD-specific interventions. Moreover, access to services requires agreement and cooperation among these decision-makers. Guided by our prior theoretical work and engagement with pediatricians and EI providers, we will influence improved access and receipt of needed services for children with ASD by offering: (1) multistage ASD screening to all EI-enrolled children ages 14-24 months, (2) motivational interviewing to parents whose children qualify for ASD services, and (3) systematic outreach to pediatricians from EI sites. This system- level approach involves altering the context in which pediatricians, EI providers, and parents assess and act on signs of ASD to reduce disparities in access to ASD diagnosis and services. This study will test the following hypotheses: 1) Exposed children with ASD will be more likely to be identified, referred, and receive ASD services, regardless of race/ethnicity, language or poverty status; 2) Exposed pediatricians and EI providers will identify more children with ASDs and refer to assessment and services at higher rates; and 3) Exposed parents of children with ASD will report greater agreement with and will be more likely to follow through on ASD-specific assessment and service referrals.

描述(由申请人提供)：拟议工作的目标是实施系统层面的干预，以(A)改善自闭症谱系障碍(ASD)的早期发现和(B)增加针对自闭症的早期干预服务的早期机会，特别是对于经常得不到早期干预服务的已知好处的儿童。这项拟议的研究建立在一项由资金支持的多阶段筛查研究的基础上，该研究目前正在3个早期干预项目中实施，这些项目服务于承诺圈的儿童，这是一个社会/经济风险很高的波士顿地区，由来自种族/少数民族人口、英语学习者或生活在贫困中的儿童组成。在美国，自闭症的发病率正在上升，最近的估计表明，每88个儿童中就有一个患有自闭症。早期诊断和干预是确保最佳长期结果的关键；然而，在诊断率和诊断年龄方面存在重大差异。与说英语的白人儿童相比，上述群体中的儿童被诊断的可能性较小，并且被诊断的时间晚了一到两年。这种延迟限制了针对自闭症的早期治疗。及时识别和治疗至少需要两个步骤：1)了解和识别ASD的早期迹象，2)早期行动。儿科医生、父母和EI提供者必须决定孩子是否有足够的迹象来证明进一步的评估或治疗是合理的，或者孩子的风险是否足够低，可以放弃立即采取行动。因此，及早采取行动需要About小组评估早期迹象并选择是/否的行动方案，我们将其称为临床阈值。我们认为，通过增加对ASD早期症状的了解，并通过影响这些关于何时筛查、评估和参考ASD特定干预措施的决策阈值，可以改善早期识别和获得护理的机会。此外，获得服务需要这些决策者之间的协议与合作。以我们之前的理论工作以及与儿科医生和EI提供者的接触为指导，我们将通过提供：(1)对所有14-24个月的EI注册儿童进行多阶段ASD筛查，(2)对符合ASD服务条件的儿童的父母进行激励性访谈，以及(3)从EI站点系统地向儿科医生进行外展，来改善ASD儿童获得和接受所需服务的机会。这种系统层面的方法包括改变儿科医生、EI提供者和父母评估ASD症状并对其采取行动的背景，以减少获得ASD诊断和服务的差距。这项研究将检验以下假设：1)暴露于ASD的儿童将更有可能被识别、转介和接受ASD服务，无论种族/民族、语言或贫困状况；2)暴露的儿科医生和EI提供者将识别更多的ASD儿童，并以更高的比率转介评估和服务；以及3)暴露的ASD儿童的父母将报告更一致，并将更有可能贯彻ASD特定的评估和服务转介。