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

唐氏综合症：使用 Medicaid Analytic eXtract (DS -TO-THE-MAX) 实现最佳轨迹和健康公平

基本信息

批准号：
10668730
负责人：
Eric S Rubenstein
金额：
$ 35.57万
依托单位：
BOSTON UNIVERSITY MEDICAL CAMPUS
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-09-30 至 2024-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10668730
关键词：
Administrative Supplement Adult Affect Age Aging Alzheimer&apos s Disease Area Caring Characteristics Classification Client Clinic Clinical Code Communities County Data Databases Dementia Developmental Disabilities Disabled Persons Down Syndrome Early identification Elderly Enrollment Environmental Risk Factor Ethnic Origin Funding Generations Geography Health Health Personnel Health Services Accessibility Health Status Healthcare Home Improve Access Incidence Individual Insurance Carriers Laws Link Longitudinal cohort Low income Medicaid Medicare Medicare/Medicaid Modeling Morbidity - disease rate Neighborhoods Outcome Patients Policies Population Positioning Attribute Prevalence Prevention Provider Public Health Race Research Resources Risk Services System Transportation Travel United States National Institutes of Health base cohort community based service dementia risk deprivation disability health care service utilization health disparity health equity healthy aging high school improved machine learning model medical specialties mortality predictive modeling prevent tool waiver

项目摘要

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.

项目摘要患有唐氏综合症（DS）的成年人患病风险增加。5，6，例如，几乎所有人都在发展阿尔茨海默氏症疾病到60.7，至关重要的是，提高对DS健康和衰老的了解至关重对于具有DS的人发挥最大的潜力，我们需要量化和改善健康的影响通过预测然后防止发病率和死亡率来差异。我们正在量化 DS人群通过我们的唐氏综合症面临的公共卫生影响和差异使用医疗补助分析提取项目（DS-to-Max; 1R01AG073179-）使用轨迹和健康平等 01 PI：Rubenstein）。 We developed the largest longitudinal cohort of adults with DS (N=55,000) and have data 从2011 - 2019年开始，医疗补助和医疗保险系统中的所有索赔和遭遇。有了这样的数据，我们全面描述了美国DS成年人的健康和保健需求。但是我们在将其他数据纳入最大的位置，从而将其置于社会生态环境和帮助我们确定健康状况不佳的社区和社会水平预测指标。人际交往，DS的成年人经常这样做未收到熟悉DS的提供者的医疗保健。只有14个DS专科诊所可服务约3％在美国和许多提供者的成年人中，从未有DS患者。在社区一级，社区影响每个人的健康和DS的成年人可能特别容易受到社区的影响剥夺。 Medicaid Home和Community Service Wavers（HCBS）提供服务（例如，运输）使残疾人能够在其社区中成长； 24个资金，允许的服务和 HCB的可用性不同，尚未对DS进行评估。因此，我们建议补充单个级别的DS到最佳级别声称并遇到具有人际关系和社区级别数据的数据。我们的目标是1A）表征医疗保健提供者的类型，分类和专业；和需要DS的成年人旅行需要的地理距离。然后，按州，种族 / 种族和1b年级）评估DS专业诊所是否影响痴呆症的事件和死亡率；和2a）：确定邻里剥夺和其他社区级健康指标对医疗保健的影响利用率和痴呆事件和死亡率2B）：评估DS成年人的HCB豁免收据并确定HCBS护楼者的收据和慷慨是否可以改善获得护理和减少或延误的机会痴呆事件和死亡率。我们的提案符合NIH的呼吁，包括“ Not-OD-20-”。 024和PA-20-272用于“同类螺柱”，以连接现有资源并扩展到个人 with Down Syndrome.’ These additional data will bolster DS-TO-THE-MAX and increase impact by spurring 社区和政策水平的变化，最终改善了DS的个人和人群的健康状况。

项目成果

期刊论文数量（6）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Caregivers' concerns and supports needed to care for adults with Down syndrome.

护理成人唐氏综合症患者需要护理人员的关注和支持。

DOI：
10.1002/ajmg.c.32041
发表时间：
2024
期刊：
American journal of medical genetics. Part C, Seminars in medical genetics
影响因子：
0
作者：
DeLaGarza,Erica;Scott,Ashley;Hillerstrom,Hampus;Hendrix,James;Rubenstein,Eric
通讯作者：
Rubenstein,Eric

Caregivers' perception of adults with Down syndrome willingness to participate in research.

护理人员对唐氏综合症成人参与研究意愿的看法。

DOI：
10.1111/jir.12999
发表时间：
2023
期刊：
Journal of intellectual disability research : JIDR
影响因子：
0
作者：
Kyprianou,N;Hendrix,J;Hillerstrom,H;Grimm,R;Kirova,A-M;Rubenstein,E
通讯作者：
Rubenstein,E

Medicare, Medicaid, and dual enrollment for adults with intellectual and developmental disabilities.

为患有智力和发育障碍的成年人提供医疗保险、医疗补助和双重参保。

DOI：
10.1111/1475-6773.14287
发表时间：
2024
期刊：
Health services research
影响因子：
3.4
作者：
Rubenstein,Eric;Tewolde,Salina;Levine,AAlex;Droscha,Lillian;Meyer,RachelMidori;Michals,Amy;Skotko,Brian
通讯作者：
Skotko,Brian

Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19.

COVID-19 一年后唐氏综合症成人的医疗保健和行为变化。

DOI：
10.1352/1944-7558-128.4.273
发表时间：
2023
期刊：
American journal on intellectual and developmental disabilities
影响因子：
0
作者：
Rubenstein,Eric;Kyprianou,Nichole;Kumar,PrishaSujin;Kriova,Anna-Mariya;Sokoloff,Alexis;Hillerstrom,Hampus;Hendrix,James
通讯作者：
Hendrix,James

Medicaid Enrollment and Service Use Among Adults With Down Syndrome.