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，影响无数人的功能和健康。 在整个生命过程中。拟议中的自闭症卓越中心，“公共卫生和自闭症科学 在整个生命过程中推进公平战略”（阶段）的应用程序建议雇用一个 总体公共卫生研究框架，以审查健康决定因素、健康不平等-特别是 代表性不足的不同人口-保健服务的提供及其对保健结果的影响。 我们中心的项目突出了生命历程的不同阶段-幼儿期，青春期到年轻 成年期和老年人。项目1解决了幼儿诊断年龄的预测因素， 自闭症，重点是在初级保健访问期间获得普遍、高保真筛查方面的不平等。 项目2和项目3审查医疗补助申请和其他国家数据，以解决 孤独症青少年和年轻人同时发生的健康状况的不成比例的负担（项目2） 中年至老年人（项目3）。项目4开发了一种新的工具，以支持从儿科向 成人保健在年轻人的频谱，重点是最低限度的口头成人。四个 研究针对独特的研究不足的群体，其特点是潜在的可改变的不良后果：年轻 自闭症检测延迟的儿童，患有自闭症的青少年和患有并发症的年轻人， 老年孤独症患者同时出现健康和认知能力下降，年轻孤独症患者，最低限度语言能力下降 有风险的成年人接受较差的医疗保健过渡。三个中心的目标是解决以下研究目标， 三个不同的关键生命阶段：目标1调查自闭症个体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公平现象，特别是在代表性不足的少数民族和经济方面。 目标3审查了卫生服务与儿童保健之间的关系， 交付和健康成果。该中心将得到三个核心的支持，以促进项目之间的协同作用： 行政核心简化了项目之间的沟通和协作; 外联核心促进与不同利益相关者的接触，并扩大我们现有的活动， 强调我们的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Medicaid、Medicare、电子 健康记录）。总的来说，该中心将解决可预防的不良后果，并促进健康， 自闭症谱系的个人，重点是由跨机构自闭症 协调委员会，包括整个生命周期的研究，减少不平等，改善健康 自闭症患者的治疗效果。