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: 9493766
• 负责人: Alice S. Carter
• 金额: $ 14.18万
• 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/9493766
• 关键词: Address; Adult; Affect; Age; Agreement; Autistic Disorder; Awareness; Behavioral; Boston; Caring; Centers for Disease Control and Prevention (U.S.); Child; Child Health; Childhood; Cities; Clinical; Collaborations; Data; Development; Developmental Disabilities; Diagnosis; Diagnostic Services; Early Diagnosis; Early Intervention; Early identification; Early treatment; Economics; Engineering; English Learner; Enrollment; Ensure; Ethnic Origin; Evaluation; Experimental Designs; Exposure to; Family; Feedback; Focus Groups; Funding; Future; Goals; Health Services Accessibility; Healthcare Systems; High Prevalence; Improve Access; Individual; Intervention; Knowledge; Language; Learning; Massachusetts; Outcome; Parents; Participant; Pediatrics; Phase; Poverty; Psychology; Public Health; Qualitative Methods; Quality of life; Race; Reporting; Research; Risk; Risk Assessment; Services; Site; Special Education; Surveys; Symptoms; System; Testing; Theoretical model; Time; Underserved Population; United States Health Resources and Services Administration; Universities; Visit; Work; autism spectrum disorder; care coordination; child services; collaborative care; cost; court; design; disparity reduction; ethnic minority population; experience; health disparity; improved; inferential statistics; intervention cost; intervention effect; intervention program; models and simulation; motivational enhancement therapy; novel; outreach; pediatrician; primary outcome; provider intervention; public health relevance; racial and ethnic; referral services; screening; service intervention; service programs; 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级干预，以（a）改善自闭症谱系障碍（ASD）的早期发现，以及（b）增加早期获得自闭症特定早期干预服务的机会，特别是对于那些经常无法获得早期干预服务的已知好处的儿童。拟议的研究建立在一项资助的多阶段筛查研究的基础上，该研究目前正在为“承诺之圈”的儿童提供 3 个早期干预项目，该地区是波士顿地区的一个社会/经济风险较高的地区，其中大部分儿童来自种族/族裔群体、英语学习者或生活在贫困中。在美国，自闭症谱系障碍 (ASD) 发病率正在上升，最近的估计表明，每 88 名儿童中就有 1 人患有自闭症谱系障碍 (ASD)。早期诊断和干预对于确保最佳的长期结果至关重要；然而，诊断率和年龄方面存在显着差异。上述群体的儿童被诊断的可能性较小，并且比白人、非贫困、讲英语的儿童晚 1-2 年被诊断。这种延迟限制了获得针对自闭症的早期治疗的机会。及时识别和治疗至少需要两个步骤：1）了解和识别自闭症谱系障碍的早期症状，2）及早采取行动。儿科医生、家长和 EI 提供者必须决定孩子是否表现出足够的迹象来证明需要进一步评估或治疗，或者孩子的风险是否足够低以放弃立即采取行动。因此，尽早采取行动需要相关群体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。我们相信，通过增加对自闭症谱系障碍早期症状的了解，并影响有关何时筛查、评估和参考自闭症谱系障碍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一致同意和合作。在我们之前的理论工作以及与儿科医生和 EI 提供者的合作的指导下，我们将通过提供以下服务来改善 ASD 儿童获得和接受所需服务的机会：(1) 对所有 EI 注册的 14-24 个月大的儿童进行多阶段 ASD 筛查，(2) 对孩子有资格获得 ASD 服务的家长进行动机性访谈，以及 (3) 对 EI 站点的儿科医生进行系统性外展。这种系统级方法涉及改变儿科医生、EI 提供者和家长评估 ASD 迹象并采取行动的环境，以减少获得 ASD 诊断和服务的差异。本研究将检验以下假设： 1) 暴露的 ASD 儿童将更有可能被识别、转介和接受 ASD 服务，无论种族/民族、语言或贫困状况如何； 2) 接触过的儿科医生和EI提供者将发现更多患有自闭症谱系障碍的儿童，并以更高的比例转介评估和服务； 3) 患有自闭症谱系障碍 (ASD) 儿童的暴露家长将更同意并更有可能遵循针对自闭症谱系障碍 (ASD) 的特定评估和服务转介。