Department of Epidemiology, Boston University School of Public Health, Boston, Massachusetts.
Biostatistics and Epidemiology Data Analytics Center, Boston University School of Public Health, Boston, Massachusetts.
JAMA Health Forum. 2023 Aug 4;4(8):e232320. doi: 10.1001/jamahealthforum.2023.2320.
Down syndrome is the leading genetic cause of intellectual disability and automatically qualifies individuals for Social Security Insurance. Therefore, Medicaid is the major health insurance provider for a population at high risk for dementia, obesity, and premature mortality. Despite the importance of Medicaid for adults with Down syndrome, little is known about how this population uses Medicaid.
To describe enrollment in, health care use in, and cost to Medicaid for adults with Down syndrome compared with adults with intellectual disability and a random sample of adults enrolled in Medicaid.
DESIGN, SETTING, AND PARTICIPANTS: In this cohort study, the data are from a claims cohort of adults aged 18 years or older enrolled in Medicaid at any point between January 1, 2011, and December 31, 2019. Participants were enrollees with 1 or more inpatient claim or 2 or more other claims with an International Classification of Diseases, Ninth Revision code or an International Statistical Classification of Diseases and Related Health Problems, Tenth Revision code for Down syndrome or intellectual disability as well as a random sample of those without developmental disability. Analyses were conducted from June 2022 to February 2023.
Data were linked across 2 data reporting systems. Main outcomes were enrollee demographic characteristics, enrollment characteristics, cost, and service use.
This cohort study included 123 024 individuals with Down syndrome (820 273 person-years of coverage; mean [SD] age, 35 [14.7] years; median age, 33 years [IQR, 21-48 years]; 51.6% men; 14.1% Black individuals; 16.7% Hispanic individuals; and 74.6% White individuals), 1 182 246 individuals with intellectual disability (mean [SD] age, 37.1 [16.8] years; median age, 33 years [IQR, 22-50 years]; 56.5% men; 22.0% Black individuals; 11.7% Hispanic individuals; and 69.5% White individuals), and 3 176 371 individuals with no developmental disabilities (mean [SD] age, 38 [18.6] years; median age, 33 years [IQR, 21-52 years]; 43.8% men; 23.7% Black individuals; 20.7% Hispanic individuals; and 61.3% White individuals). Median enrollment in Medicaid for a person with Down syndrome was 8.0 years (IQR, 5.0-9.0 years; mean [SD], 6.6 [2.6] years). Costs were higher for the Down syndrome group (median, $26 278 per person-year [IQR, $11 145-$55 928 per person-year]) relative to the group with no developmental disabilities (median, $6173 per person-year [IQR, $868-$58 390 per person-year]). Asian, Black, Hispanic, Native American, and Pacific Islander adults with Down syndrome had fewer costs and claims per person-year compared with White adults with Down syndrome.
This cohort study of individuals with Down syndrome enrolled in Medicaid found consistent enrollment and high use of health care in a population with high health care needs. Results were similar comparing individuals with Down syndrome and those with intellectual disability, with both groups differing from a sample of Medicaid enrollees with no developmental disabilities. Medicaid data are a useful tool for understanding the health and well-being of individuals with Down syndrome.
重要性：唐氏综合征是导致智力残疾的主要遗传原因，因此，个人自动符合社会保障保险的资格。因此，医疗补助是痴呆症、肥胖和过早死亡风险较高的人群的主要健康保险提供者。尽管医疗补助对唐氏综合征患者很重要，但人们对这一人群如何使用医疗补助知之甚少。
目的：描述与智力残疾患者和随机抽取的参加医疗补助的成年人相比，唐氏综合征成年人在医疗补助中的参保情况、医疗保健使用情况和医疗补助费用。
设计、地点和参与者：在这项队列研究中，数据来自一个索赔队列，队列中的成年人在 2011 年 1 月 1 日至 2019 年 12 月 31 日期间的任何时间点参加医疗补助。参与者是有 1 次或以上住院或 2 次或以上其他索赔的患者，这些索赔有国际疾病分类第 9 版或国际疾病与相关健康问题统计分类第 10 版的代码，用于唐氏综合征或智力残疾，以及没有发育障碍的随机抽样。分析于 2022 年 6 月至 2023 年 2 月进行。
主要结果和措施：数据通过 2 个数据报告系统进行链接。主要结果是参保者的人口统计学特征、参保特征、费用和服务使用情况。
结果：这项队列研究包括 123024 名唐氏综合征患者（820273 人年的覆盖范围；平均[标准差]年龄 35 [14.7]岁；中位数年龄 33 岁[IQR，21-48 岁]；51.6%为男性；14.1%为黑人；16.7%为西班牙裔；74.6%为白人），1182246 名智力残疾患者（平均[标准差]年龄 37.1 [16.8]岁；中位数年龄 33 岁[IQR，22-50 岁]；56.5%为男性；22.0%为黑人；11.7%为西班牙裔；69.5%为白人），以及 3176371 名无发育障碍的患者（平均[标准差]年龄 38 [18.6]岁；中位数年龄 33 岁[IQR，21-52 岁]；43.8%为男性；23.7%为黑人；20.7%为西班牙裔；61.3%为白人）。唐氏综合征患者的医疗补助平均参保年限为 6.6 [2.6]年（IQR，5.0-9.0 年；中位数，8.0 年[IQR，5.0-9.0 年]）。唐氏综合征组的费用较高（中位数，每人每年 26278 美元[IQR，每人每年 11145-55928 美元]），而无发育障碍组的费用较低（中位数，每人每年 6173 美元[IQR，每人每年 868-58930 美元]）。与白人唐氏综合征患者相比，亚洲、黑人、西班牙裔、美国原住民和太平洋岛民的唐氏综合征成年人每人每年的费用和索赔较少。
结论和相关性：这项对参加医疗补助的唐氏综合征患者的队列研究发现，在一个高医疗需求人群中，参保和高医疗保健使用率一致。将唐氏综合征患者与智力残疾患者进行比较的结果相似，这两组与无发育障碍的医疗补助参保者样本均不同。医疗补助数据是了解唐氏综合征患者健康和幸福状况的有用工具。
