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) 的成年人发病的风险增加5, 6 例如，几乎所有人都会患阿尔茨海默病 60.7 岁时患病提高对 DS 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。 8 为了让 DS 患者充分发挥潜力，我们需要量化和改善健康影响通过预测并预防发病率和死亡率，我们在量化差异方面取得了重大进展。通过我们的唐氏综合症走向最佳，DS 人群面临的公共卫生影响和差异使用 Medicaid Analytic eXtract 项目的轨迹和健康公平（DS-TO-THE-MAX；1R01AG073179- 01 PI：Rubenstein）我们开发了最大的 DS 成人纵向队列（N = 55,000）并拥有数据。 2011 年至 2019 年医疗补助和医疗保险系统内的所有索赔和遭遇。正在全面描述美国患有 DS 的成年人的健康和医疗保健需求。能够将额外的数据纳入 DS-TO-THE-MAX，将结果置于社会生态环境中，帮助我们确定社区和社会层面健康状况不佳的预测因素，患有 DS 的成年人经常这样做。没有接受熟悉 DS 的医疗服务提供者的医疗服务只有 14 家 DS 专科诊所为约 3% 的人提供服务。在美国，许多患有 DS 的成年人和许多医疗服务提供者在社区层面从未遇到过 DS 患者。社区影响每个人的健康，患有 DS 的成年人可能特别容易受到社区的影响医疗补助家庭和社区服务豁免 (HCBS) 提供服务（例如，交通），使残疾人能够在社区中茁壮成长；24 资金、允许的服务以及 HCBS 的可用性因州而异，并且尚未针对 DS 进行评估，因此我们建议进行补充。个人层面的 DS-TO-THE-MAX 主张并遇到具有人际和社区层面数据的数据。我们的目标是 1a) 描述医疗保健提供者的类型、分类和专业；以及患有 DS 的成年人需要接受护理的地理距离然后，按州、种族/评估差异。种族和年份 1b) 评估 DS 专科诊所是否影响痴呆症发病率和死亡率；以及 2a)：确定邻里贫困和其他社区级健康指标对医疗保健的影响利用率以及痴呆症发病率和死亡率 2b)：评估 DS 成人的 HCBS 豁免接受情况并确定 HCBS 豁免的接受和慷慨是否可以改善获得护理的机会并减少或延迟我们的提案符合 NIH 在 INCLUDE 项目 NOT-OD-20- 下的呼吁。 024 和 PA-20-272 用于“队列研究”，以连接现有资源并扩展到包括个人这些额外的数据将支持 DS-TO-THE-MAX 并通过刺激来增加影响力社区和政策层面的变化最终将改善 DS 患者和人群的健康。

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.