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，影响许多方面的功能和福祉 整个生命过程的领域。拟议的自闭症卓越中心，“公共卫生和自闭症科学 在整个生命过程中推进公平战略”（PHASES）申请建议采用 总体公共卫生研究框架，以检查健康决定因素、健康不平等——尤其是在 不同人群的代表性不足——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历程的不同阶段——幼儿期、青春期到青年期 成年期和老年人。项目 1 探讨患有以下疾病的幼儿的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、高保真度筛查的不平等。 项目 2 和 3 检查医疗补助索赔和其他国家数据，以解决因 自闭症青少年和年轻人同时发生的健康状况负担过重（项目 2） 和中年至老年人（项目 3）。项目 4 开发了一种新工具来支持从儿科到 该谱系年轻人的成人医疗保健，重点是语言能力最低的成年人。四个中的每一个 研究针对的是独特的被研究群体，其特征是可能产生可改变的不良后果：年轻人 自闭症检测延迟的儿童、患有共存病症的自闭症青少年和年轻人， 患有健康状况和认知能力恶化的老年自闭症患者，以及言语能力极低的年轻自闭症患者 面临医疗保健转型不良风险的成年人。三个中心目标涉及以下研究目标： 三个不同的关键生命阶段：目标 1 研究自闭症患者可改变的健康决定因素；目标2 评估卫生和卫生服务方面的不平等，特别是在代表性不足的少数群体和经济方面 自闭症谱系中的弱势群体；目标 3 检查卫生服务之间的关系 交付和健康结果。该中心将得到三个核心的支持，促进跨项目的协同作用： 管理核心简化了项目之间的沟通和协作；传播和 外展核心促进与不同利益相关者的接触，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（例如医疗补助、医疗保险、电子数据）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良后果并促进人们的福祉 自闭症谱系中的个人，重点关注机构间自闭症协会确定的几个优先事项 协调委员会，包括整个生命周期的研究、减少不平等和改善健康 自闭症患者的结果。