Down Syndrome: Toward Optimal Trajectories and Health Equity using Medicaid Analytic eXtract (DS -TO-THE-MAX)

项目摘要 患有唐氏综合征(DS)的成年人罹患疾病的风险增加5，6例如，几乎所有人都会患上阿尔茨海默氏症 60.7提高对DS患者健康和衰老的了解至关重要，这样才能使患有DS的成年人茁壮成长。 为了让DS患者充分发挥他们的潜力，我们需要量化和改善对健康的影响 通过预测然后预防发病率和死亡率，这一差距很大。我们在量化方面正在取得重大进展 唐氏综合征对公众健康的影响和DS人群面临的差距 使用医疗补助分析摘录项目的轨迹和健康公平(DS-to-the-Max；1R01AG073179- 01 PI：Rubenstein)。我们建立了最大的成人DS纵向队列(N=55,000)，并有数据 2011-2019年医疗补助和医疗保险系统内的所有索赔和遇到的情况。有了这样的数据，我们 全面描述了美国成人DS患者的健康和保健需求。然而，我们仍在 将更多数据合并到DS-to-Max中，从而在社会生态环境中产生结果 帮助我们确定健康状况不佳的社区和社会层面的预测因素。在我个人看来，患有DS的成年人经常这样做 不接受熟悉DS的提供者提供的医疗保健。只有14家DS专科诊所提供约3%的服务 在美国，大多数成年人患有DS，而且许多提供者从未有过DS患者。在社区层面， 邻里关系影响每个人的健康，患有DS的成年人可能特别容易受到邻里关系的影响 剥夺。医疗补助家庭和基于社区的服务豁免(HCB)提供服务(例如， 交通)，使残疾人能够在社区中茁壮成长；24提供资金，允许提供服务，以及 六氯联苯的可用性因州而异，尚未对DS进行评估。因此，我们建议补充 个人级别的DS-to-The-Max声明数据，并将数据与人际和社区级别的数据相遇。 我们的目标是：1)确定卫生保健提供者的类型、分类和专科；以及 成人DS患者需要出行的地理距离。然后，按州、种族/地区评估差异 种族和1b年)评估DS专科诊所是否影响痴呆症发病率和死亡率；以及2a)： 确定社区剥夺和其他社区一级健康指标对卫生保健的影响 使用情况和痴呆症发病率和死亡率2b)：评估患有DS的成年人的HCBS减免收据 并确定是否收到和慷慨的HCBS豁免改善了获得护理的机会，并减少或延误了 痴呆症发病率和死亡率。我们的建议符合美国国立卫生研究院在包括项目下的呼吁，而不是-OD-20- 024和PA-20-272，以连接现有资源并扩展到包括个人 患有唐氏综合症。这些额外的数据将支持DS to the-Max，并通过刺激增加影响 社区和政策层面的变化，最终改善了患有DS的个人和人群的健康。

PROJECT ABSTRACT Adults with Down syndrome (DS) are at increased risk of morbidities5, 6 e.g., almost all develop Alzheimer’s disease by age 60.7 It is critical to improve understanding of health and aging in DS so adults with DS thrive.8 For individuals with DS to reach their fullest potential, we need to quantify and ameliorate impacts of health disparity by predicting then preventing morbidity and mortality. We are making major strides in quantifying the public health impacts and disparities faced by the DS population through our Down Syndrome Toward Optimal Trajectories and Health Equity using Medicaid Analytic eXtract project (DS-TO-THE-MAX; 1R01AG073179- 01 PI: Rubenstein). We developed the largest longitudinal cohort of adults with DS (N=55,000) and have data on all claims and encounters within the Medicaid and Medicare systems from 2011-2019. With such data, we are comprehensively describing the health and health care needs of adults with DS in the US. Yet we are in position to incorporate additional data into DS-TO-THE-MAX that place results in socio-ecologic context and help us identify community and societal level predictors of poor health. Interpersonally, adults with DS often do not receive health care from providers familiar with DS. There are only 14 DS specialty clinics that serve ~3% of adults with DS in the US and many providers have never had a patient with DS. At the community level, neighborhoods affect everyone’s health and adults with DS may be particularly vulnerable to neighborhood deprivation. Medicaid Home and Community Based Service waivers (HCBS) provide services (e.g., transportation) that enable disabled people to thrive in their communities;24 funding, services allowed, and availability of HCBS differ by states and has not been assessed for DS. Therefore, we propose to supplement the individual level DS-TO-THE-MAX claims and encounters data with interpersonal and community level data. Our aims are to 1a) Characterize the type, classification, and specialty of health care providers; and geographic distance needed to travel for adults with DS to care. Then, evaluate differences by state, race / ethnicity, and year 1b) Evaluate whether DS specialty clinics impact dementia incidence and mortality; and 2a): Determine the impact of neighborhood deprivation and other community-level health indicators on health care utilization and on dementia incidence and mortality 2b): Assess HCBS waiver receipt among adults with DS and determine if receipt and generosity of HCBS waivers improves access to care and reduces or delays in dementia incidence and mortality. Our proposal meets the NIH’s call under the INCLUDE project, NOT-OD-20- 024, and PA-20-272 for ‘Cohort Stud[ies] to connect existing resources and expand to inclusion of individuals with Down Syndrome.’ These additional data will bolster DS-TO-THE-MAX and increase impact by spurring community and policy level changes, ultimately, improving health for individuals and the population with DS.