Healthcare Transitions and the Health of Adolescents and Young Adults with Intellectual or Developmental Disabilities

总结 患有智力或发育障碍（IDD）的人--数量庞大且不断增长的人口--现在生活 比过去几十年更长，生活质量更高。然而，这一群体仍然遭受过度 发病率，特别是在青春期和青年期，当他们预计使 卫生保健过渡（HCT）从以儿童为中心的成人为导向的卫生保健系统。虽然很可能 一些患有IDD的青少年和年轻人经历了高质量的HCT，我们对如何进行HCT的理解 HCT在体内纵向进行，对于大量患有IDD的青少年和年轻成年人， 极其有限。在人群水平上，我们不知道HCT开始或结束的年龄，也不知道HCT是否 时间取决于所涉及的医生的类型。此外，关于医疗保健如何 HCT期间这一人群的质量变化以及保险缺口可能在破坏这种护理方面发挥的作用 质量. 这项拟议中的研究结合了三个最近开发的基于索赔的工具， 迄今为止，青少年和年轻成人IDD的纵向和多支付者数据集。它用了五年的时间 三个州的所有付款人索赔数据库（2014-2018年），以确定10-28岁的IDD患者（69，000人） 在科罗拉多有85，000人，在马萨诸塞州有85，000人，在纽约有217，000人）。然后它追求 以下四个目的：（1）根据以下方面描述青少年和年轻成人IDD的HCT特征： 涉及的医生类型和发生转移的年龄;（2）评估护理质量 在发生HCT的年龄段，IDD患者接受的保险;（3）描述保险缺口 与医疗补助年龄19资格规则相关;（4）检查保险缺口之间的关系 在19岁时重新确定医疗补助资格和临床护理质量后， 方法. 这项研究将为青少年和年轻人建立急需的关于HCT如何进行的基本事实 与缺碘症，使医生，护士和专职医疗人员可以帮助发展交付系统，保险， 和支付政策干预，更好地为患有缺碘症的青少年和年轻成年人创造健康。是 它在为研究创建的数据库中是新颖的，它将量化HCT的特征，它对护理的评估 质，并运用准实验方法考察其与各地保险缺口的关系 医疗补助的年龄19岁资格规则的时间和青少年和年轻成人IDD的健康。 这项研究解决了NICHD的战略优先事项，即“改善从青少年到成年人的过渡， 为残疾人提供.保健”以及智力和发育残疾分支的优先事项 “了解[缺碘症]共病症状的复杂性”和“促进..缺碘症的治疗， 影响临床护理”

SUMMARY People with intellectual or developmental disabilities (IDD)—a sizeable and growing population—now live longer and enjoy better quality of life than in prior decades. However, this group still suffers from excess morbidity, especially during adolescence and young adulthood, the time when they are expected to make health care transitions (HCTs) from child-centered to adult-oriented health care systems. Although it is likely that some adolescents and young adults with IDD experience high-quality HCTs, our understanding of how HCTs proceed longitudinally, in vivo for large populations of adolescents and young adults with IDD is extremely limited. At a population level, we do not know the ages at which HCTs start or end or whether the timing depends on the type of physicians involved. Additionally, scant data exist regarding how health care quality changes for this population during HCTs and the role insurance gaps may play in disrupting that care quality. The proposed study combines three recently developed claims-based tools to create one of the largest, longitudinal, and multi-payer datasets of adolescents and young adults with IDD to date. It uses five years of all-payer claims databases (2014–2018) in three states to identify individuals aged 10–28 with IDD (69,000 persons in Colorado, 85,000 persons in Massachusetts, and 217,000 persons in New York). It then pursues the following four Aims: (1) to characterize HCTs for adolescents and young adults with IDD in terms of the types of physicians involved and the ages across which transfers occur; (2) to assess the quality of care received by people with IDD during the ages at which HCTs occur; (3) to characterize insurance gaps associated with Medicaid age 19 eligibility rules; and (4) to examine the relationship between insurance gaps following Medicaid’s eligibility redetermination at age 19 and clinical care quality using quasi-experimental methods. This study will establish much-needed basic facts about how HCTs proceed for adolescents and young adults with IDD so that doctors, nurses, and allied health professionals can help develop delivery system, insurance, and payment policy interventions that better create health among adolescents and young adults with IDD. It is novel in the database it creates for study, the features of HCTs that it will quantify, its assessment of care quality, and its use of quasi-experimental methods to examine the relationship between insurance gaps around the time of Medicaid’s age 19 eligibility rules and the health of adolescents and young adults with IDD. This research addresses the NICHD’s strategic priority to “improve the transition from adolescent to adult health care…for [those] with disabilities” and the Intellectual and Developmental Disabilities Branch’s priorities to “understand the complexity of comorbid symptoms [of IDD]” and “promote…treatments for IDD that will impact clinical care.”