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状况，会影响无数的功能和福祉 整个生活过程中的领域。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的策略”（阶段）申请提案为员工 总体公共卫生研究框架以检查健康决定者，健康不平等 - 尤其是在 代表性不足的人群不足 - 卫生服务提供及其对健康成果的影响。 我们中心的项目突出显示了生活课程的不同阶段 - 幼儿，青少年到年轻人 成年和老年人。项目1解决了幼儿诊断年龄的预测指标 自闭症，重点是在初级保健访问期间获得普遍，高保真筛查的不平等现象。 项目2和3检查医疗补助索赔和其他国家数据，以解决由 加速的青少年和年轻人的同时发生健康状况的伯宁不成比例的伯宁（项目2） 和年龄与年龄的成年人（项目3）。项目4开发了一种新工具，以支持从小儿过渡到 年轻人的成人医疗保健在范围内，重点是最低言语的成年人。四个 研究目标是以潜在可修改广告结果为特征的独特所理解的群体：Young 自闭症检测延迟的儿童，加速度和患有同时发生条件的年轻人， 年龄较大 成年人有不良医疗保健过渡的风险。这三个中心的目的是针对以下研究目标 三个不同的关键生活阶段：AIM 1研究加速个体的可修改健康决定者；目标2 评估健康和卫生服务的不平等，尤其是代表性不足的少数民族和经济上的不平等现象 自闭症谱系中的弱势人； AIM 3考试卫生服务之间的关系 分娩和健康成果。该中心将得到三个核心支持协同作用的核心： 行政核心简化了跨项目的沟通和协作；传播和 宣传核心促进与潜水员利益相关者的参与，并将我们现有的活动扩展到 强调我们团队与社区之间的双向交流；数据核心确保 来自大型和潜水员来源的数据的质量，完整性和安全性（例如，医疗补助，医疗保险，电子 健康记录）。总体而言，该中心将解决可预防的广告结果并促进福祉 自闭症谱系中的个体，重点是机构间自闭症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 加速人的结果。