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

摘要 智力或发育障碍(IDD)的人--一个相当大且不断增长的人口--现在生活在 比前几十年更长，享受更好的生活质量。然而，这一群体仍然遭受着过度的痛苦 发病率，尤其是在青春期和青春期，这是他们被认为有可能 卫生保健从以儿童为中心向以成人为导向的过渡。尽管很有可能 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 对于患有IDD的大量青少年和年轻人，HCT是纵向的，活体内进行的 非常有限。在人口层面上，我们不知道HCT的开始或结束年龄，也不知道 时机取决于所涉及的医生类型。此外，关于医疗保健的数据也很少 这一人群在HCT期间的质量变化以及保险缺口在破坏这一保健方面可能发挥的作用 质量。 这项拟议的研究结合了三个最近开发的基于索赔的工具，以创建最大的、 到目前为止，青少年和年轻的IDD患者的纵向和多付款人数据集。它用了五年的时间 三个州的All-Payer索赔数据库(2014-2018)，以确定10-28岁的IDD患者(69,000人 科罗拉多州有85000人，马萨诸塞州有85000人，纽约有21.7万人)。然后它就会追逐 以下四个目标：(1)从以下方面描述青少年和青壮年IDD患者的HCT 涉及的医生类型和转院年龄；(2)评估护理质量 IDD患者在发生HCT的年龄期间收到的；(3)描述保险缺口 与医疗补助19岁资格规则相关；以及(4)检查保险缺口之间的关系 遵循医疗补助在19岁时重新确定的资格和使用准实验的临床护理质量 方法：研究方法。 这项研究将建立关于青少年和年轻人如何进行HCT的迫切需要的基本事实 与IDD合作，以便医生、护士和专职卫生专业人员能够帮助开发交付系统、保险 以及支付政策干预，以更好地为患有IDD的青少年和年轻人创造健康。它是 它为研究创建的数据库中的新奇，它将量化的HCT的特征，它对护理的评估 并运用准实验方法考察保险质量与周边保险缺口的关系 医疗补助的19岁时间资格规则和患有IDD的青少年和年轻人的健康。 这项研究解决了NICHD的战略重点，即改善从青少年到成人的过渡 医疗保健…为[那些]残疾人“以及智力和发育障碍处的优先事项 “了解[缺乏症]共病症状的复杂性”和“推广…”对IDD的治疗将会 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.”