Leveraging Claims Data to Compare Disparities in Health Outcomes for Autistic People and People With Down Syndrome

利用理赔数据比较自闭症患者和唐氏综合症患者的健康结果差异

• 批准号: 10853581
• 负责人: Diana L Robins
• 金额: $ 46.26万
• 依托单位: DREXEL UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-06 至 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10853581
• 关键词: Address; Adolescence; Adolescent; Adolescent and Young Adult; Adult; Affect; Age; Aging; Back; Basic Science; Biological Factors; Child; Childhood; Clinical Sciences; Cognitive; Collaborations; Communication; Communities; Community Networks; Complex; Data; Data Security; Detection; Deterioration; Diagnosis; Diagnostic Services; Down Syndrome; Early Diagnosis; Economically Deprived Population; Elderly; Electronic Health Record; Ensure; Environmental Risk Factor; Equity; Feeds; Future; Goals; Health; Health Services; Healthcare; Individual; Inequity; Knowledge; Life; Life Cycle Stages; Link; Longevity; Medicaid; Medicare; Minority; Outcome; Personal Satisfaction; Persons; Population; Population Heterogeneity; Populations at Risk; Prevalence; Prevention; Preventive; Public Health; Quality of life; Research; Research Project Grants; Risk; Science; Security; Source; Strategic Planning; Structure; Subgroup; System; Testing; Toddler; Underrepresented Minority; United States National Institutes of Health; Vulnerable Populations; access disparities; adolescent with autism spectrum disorder; adult with autism spectrum disorder; adverse outcome; autism spectrum disorder; autistic; autistic children; data integration; diverse data; early childhood; economic disparity; ethnic diversity; evidence base; experience; health care delivery; health care service; health determinants; health disparity; health inequalities; health service use; improved; individuals with autism spectrum disorder; innovation; middle age; minimally verbal; outreach; pressure; primary care visit; programs; public health research; racial diversity; screening; service delivery; social factors; synergism; tool; young adult

Autism is a common neurodevelopmental condition that affects functioning and well-being in a myriad of domains across the life course. The proposed Autism Center of Excellence, “Public Health and Autism Science advancing Equitable Strategies across the life course” (PHASES) application proposes to employ an overarching public health research framework to examine health determinants, health inequity – especially in under-represented diverse populations – and health services delivery and their impact on health outcomes. Projects in our center highlight different stages of the life course – early childhood, adolescence to young adulthood, and older adults. Project 1 addresses predictors of age of diagnosis among young children with autism, with emphasis on inequities in access to universal, high-fidelity screening during primary care visits. Projects 2 and 3 examine Medicaid claims and other national data to address key issues arising from the disproportionate burden of co-occurring health conditions in autistic adolescents and young adults (Project 2) and middle age-to-older adults (Project 3). Project 4 develops a new tool to support transition from pediatric to adult healthcare in young adults on the spectrum, with emphasis on minimally verbal adults. Each of the four studies targets unique understudied groups characterized by potentially modifiable adverse outcomes: young children with delayed autism detection, autistic adolescents and young adults with co-occurring conditions, older autistic adults with co-occurring health and cognitive deterioration, and young autistic, minimally verbal adults at risk for poor health care transition. The three Center Aims address the following research goals at three different key life stages: Aim 1 investigates modifiable health determinants for autistic individuals; Aim 2 evaluates inequities in health and health services, especially in under-represented minorities and economically disadvantaged persons on the autism spectrum; and Aim 3 examines the relations between health services delivery and health outcomes. The Center will be supported by three cores facilitating synergy across projects: the Administrative Core streamlines communication and collaboration across projects; the Dissemination and Outreach Core facilitates engagement with diverse stakeholders and expands our existing activities to emphasize bidirectional communication between our team and the community; and the Data Core ensures quality, integrity, and security of data from large and diverse sources (e.g. Medicaid, Medicare, electronic health records). Overall, the Center will address preventable adverse outcomes and promote wellbeing in individuals on the autism spectrum, with a focus on several priorities identified by the Interagency Autism Coordinating Committee, including research across the lifespan, reducing inequities, and improving health outcomes for autistic persons.

自闭症是一种常见的神经发育疾病，在无数的 生命历程中的各个领域。拟建的自闭症卓越中心，“公共卫生与自闭症科学” 在整个生命过程中推进公平战略“(阶段)应用程序建议采用 检查健康决定因素、健康不平等的总体公共卫生研究框架--特别是在 代表不足的不同人群--以及卫生服务的提供及其对健康结果的影响。 我们中心的项目突出了生命过程的不同阶段-早期儿童、青春期到青年 成人期，以及老年人。项目1解决了儿童中诊断年龄的预测因素。 自闭症，重点是在初级保健就诊期间获得普遍的高保真筛查方面的不平等。 项目2和3审查医疗补助申请和其他国家数据，以解决 自闭症青少年和青壮年共生健康状况的不成比例负担(项目2) 和中老年(项目3)。项目4开发了一种新工具，以支持从儿科到 年轻人的成人保健，重点是说话最少的成年人。四个人中的每一个 研究的目标是独特的未被研究的群体，其特征是潜在的可改变的不良后果：Young 自闭症检测延迟的儿童、自闭症青少年和患有共病的年轻人， 同时患有健康和认知衰退的老年自闭症患者和语言能力较弱的年轻自闭症患者 成年人面临较差的医疗保健过渡风险。这三个中心旨在解决以下研究目标： 三个不同的关键生命阶段：目标1调查自闭症患者的可修改健康决定因素；目标2 评估保健和保健服务方面的不平等现象，特别是在代表性不足的少数群体和经济方面 自闭症谱系上的弱势群体；以及目标3审查卫生服务之间的关系 分娩和健康结果。该中心将得到三个核心的支持，以促进项目之间的协同： 行政核心简化了跨项目的沟通和协作；传播和 外联核心促进了与不同利益攸关方的接触，并将我们现有的活动扩展到 强调我们团队和社区之间的双向沟通；数据核心确保 来自大量不同来源(如Medicaid、Medicare、电子产品)的数据的质量、完整性和安全性 健康记录)。总体而言，该中心将解决可预防的不利后果，并促进 自闭症谱系上的个人，重点关注机构间自闭症确定的几个优先事项 协调委员会，包括跨寿命、减少不平等和改善健康的研究 自闭症患者的结局。