PREGNANCY RATES, RISK FACTORS, AND CHILD AND MOTHER OUTCOMES FOR WOMEN WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES IN WISCONSIN.

项目摘要 超过220万美国成年人患有智力或发育障碍(IDD)，在以下方面存在差异 经济地位、健康和教育。在过去的二十年里，越来越多的年轻人携带着IDD 诊断(3-17岁儿童的5.8%，自1999年以来增加了35%)。随着这些人口进入生殖阶段 在此期间，个人、家庭和研究人员提出了对怀孕期间和 IDD妇女及其子女的育儿之道。了解当前的比例至关重要 怀孕；不良妊娠结局的风险因素；以及由此产生的母婴发育 碘缺乏病妇女的结局和家庭服务利用，以充分服务于患有IDD的人群并做好准备 对于未来，更大的群体行使他们的生育权。我们的目标是建立基础知识 有必要改善妊娠结局，并制定支持患有IDD的父母的方案。在这款R03中，我们 建议利用大数据4小朋友(BD4LK)项目，该项目将威斯康星州全民医疗补助计划联系起来 2007年至2016年的怀孕情况(N≈26万)到一年的孕前医疗补助申请，产后产妇 索赔和卫生服务使用，以及儿童健康结果和卫生服务使用。医疗补助是领先的 威斯康星州为IDD患者提供的健康服务；6然而，这些数据没有被充分利用来检查 生殖和妊娠相关健康结果服务使用情况。我们的三个目标是：(1)估计 在我们的BD4LK中，计算IDD妇女的活产比例，并计算年龄别生育率和总生育率 样本，与未患IDD的母亲进行比较；(2)评估患有IDD的孕妇是否处于 与没有缺碘的孕妇相比，孕妇怀孕或儿童相关并发症的风险更高 并调查可能的途径；以及(3)描述患有IDD的母亲的妊娠后结局 他们的孩子包括健康结果和卫生服务摄取量，并与母亲的结果进行比较 没有国际直拨电话。这种方法是创新的，因为它使用了这种独特的数据集，在方法上合理的方法， 以及在研究过程中与患有IDD的妇女进行互动。我们的结果将帮助服务提供商更好地 为育龄缺碘妇女及其家庭提供服务。结果还将帮助我们确定特定领域 进行医疗和行为干预。作为较大的IDD年龄和生殖年龄的个人队列 权利得到承认，我们将看到更多的父母患有ID.7-10这笔赠款将提供初步数据和 支持进一步建立数据联系以评估社会服务使用情况所需的资源。此外，这项工作将 支持我们的目标，即建立一个IDD女性及其家庭的预期纵向队列 利用研究成果和服务使用情况，并制定有效的干预措施，以改善健康和质量 对于这一日益增长的患有IDD的父母和他们的孩子来说，这是一种新的生活方式。

Project abstract Over 2.2 million US adults have an intellectual or developmental disability (IDD), and experience disparities in economic standing, health, and education. In the past twenty years, more young people are carrying IDD diagnoses (5.8% of children age 3-17, 35% increase since 1999). As this population enters the reproductive period, individuals, families, and researchers have raised concern about wellbeing during pregnancy and parenthood for women with IDD and their children. It is vital to understand the current proportion of pregnancies; risk factors for poor pregnancy outcomes; and resulting maternal and child developmental outcomes and familial service use in women with IDD to adequately serve the population with IDD and prepare for future, larger cohorts exercising their reproductive rights. We aim to build the foundational knowledge necessary to improve pregnancy outcomes and develop programs to support parents with IDD. In this R03, we propose to leverage the Big Data 4 Little Kids (BD4LK) project which links Wisconsin State Medicaid for all pregnancies from 2007-2016 (N≈260 000) to one-year prepregnancy Medicaid claims, post-partum maternal claims and health service use, and child health outcomes and health service use. Medicaid is the leading health service provider for people with IDD in Wisconsin;6 yet, these data are underutilized to examine reproductive and pregnancy related health outcomes service use. Our three aims are to: (1) Estimate proportion of live births, and calculate age specific and total fertility rate in women with IDD in our BD4LK sample, comparing results to mothers without IDD; (2) Evaluate whether pregnant women with IDD are at greater risk for maternal pregnancy or child related complications compared to pregnant women without IDD and investigate potential pathways; and (3) Characterize post-pregnancy outcomes for mothers with IDD and their children including health outcomes and health service uptake and compare with outcomes for mothers without IDD. This approach is innovative for its use of this unique data set, methodologically sound approach, and interaction with women with IDD in the research process. Our results will help service providers better serve women with IDD of reproductive age and their families. Results will also help us identify specific areas for medical and behavioral intervention. As larger cohorts of individuals with IDD age and their reproductive rights are recognized, we will see more parents with IDD.7-10 This grant will provide the preliminary data and resources needed to support further data linkages to assess social service use. Additionally, this work will support our aim to build a prospective longitudinal cohort of women with IDD and their families that can be leveraged to study outcomes and service use and develop effective interventions to improve health and quality of life for this growing population of parents with IDD and their children.