Understanding Barriers to Reproductive Health Care among Women with Autism Spectrum Disorder (ASD)

了解患有自闭症谱系障碍 (ASD) 的女性的生殖保健障碍

• 批准号: 10195839
• 负责人: Jennifer Lisa Ames
• 金额: $ 8万
• 依托单位: KAISER FOUNDATION RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-04-01 至 2023-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10195839
• 关键词: Address; Adult; Advocacy; Age; Anxiety; Area; Attention deficit hyperactivity disorder; Back; Behavior; Behavioral; Biological; COVID-19; California; Caring; Case-Control Studies; Cervical Cancer Screening; Characteristics; Child; Complications of Diabetes Mellitus; Computerized Medical Record; Data; Databases; Development; Developmental Disabilities; Diagnosis; Discipline of obstetrics; Eating Disorders; Emotions; Epidemiology; Epilepsy; Ethnic Origin; Etiology; Face; Feeling; Frequencies; Future; Gestational Diabetes; Gynecologic; Gynecology; Health; Health Services; Health Status; Healthcare; Hypersensitivity; Improve Access; Incidence; Integrated Delivery of Health Care; Integrated Health Care Systems; Intellectual functioning disability; Investigation; Knowledge; Literature; Logistic Regressions; Longevity; Medical; Menstruation; Mental Depression; Mental Health; Mothers; Outcome; Outpatients; Pain; Patient Self-Report; Patients; Pharmaceutical Preparations; Population; Pre-Eclampsia; Pregnancy; Pregnancy Complications; Pregnancy Histories; Premature Birth; Premature Labor; Prenatal care; Prevalence; Preventive healthcare; Procedures; Provider; Race; Registries; Regulation; Reproductive Health; Research; Research Design; Risk; Sampling; Sensory; Services; Sex Behavior; Sexual Health; Sexual abuse; Social Change; Surveys; Sweden; Symptoms; System; Telemedicine; Ultrasonography; United States; Visit; Woman; Women' s Health Services; autism spectrum disorder; autistic; care delivery; delivery complications; epidemiology study; experience; gender dysphoria; health care delivery; health care disparity; health care service utilization; health disparity; high risk; improved; individuals with autism spectrum disorder; male; neurodevelopment; obstetric care; physical conditioning; public health relevance; screening; screening guidelines; sex; sexually active; social; social communication; sociodemographics

ABSTRACT Early evidence suggests that women with autism spectrum disorder (ASD) experience unique challenges around reproductive and sexual health. Exacerbating these problems, autistic women face health care disparities in accessing women’s health services. At Kaiser Permanente Northern California (KPNC), a large integrated healthcare system, we found that women with ASD utilize gynecological care and cervical cancer screenings at nearly half the rate of women with ADHD or typical neurodevelopment. Aim 1 examines which factors, including sociodemographic characteristics, medical and psychiatric conditions, and other types of healthcare utilization may contribute to autistic women underutilizing different types of gynecologic care. Aim 2 will examine the epidemiology of pregnancy in women with ASD and whether autistic women also experience gaps in obstetric care, an area that has been largely understudied. We will sample women with and without autism using a case-control study design. There are currently 2600 adult women in the KPNC autism registry with 350 pregnancies enumerated among them. This population is growing dramatically as the wave of children diagnosed with ASD reaches adulthood. We will examine differences in obstetrics/gynecology utilization, including frequency and counts of visits, procedures, and prescriptions, in the period of January 2016 to December 2020. We will examine pregnancy history extending back to 1995, the year KPNC’s outpatient databases were established. Using multivariate logistic regression, we will examine whether factors such as race/ethnicity, age at ASD diagnosis, and mental and physical health status are associated with utilization of gynecologic care among women with ASD compared with controls. We will also describe the epidemiology of pregnancy and obstetric care utilization, including ultrasounds and screenings for gestational diabetes, among autistic women compared to controls. Given the impact of COVID-19 on health care, we will conduct an analysis focused on care delivery in 2020 to explore how the shift to telemedicine may have be impacting OB/GYN care disparities between women with and without ASD. Study findings will inform the development of strategies to improve provider knowledge, care practices, and effective obstetrics/gynecology health care delivery for adult women with ASD.

摘要 早期的证据表明，患有自闭症谱系障碍（ASD）的女性面临着独特的挑战。 生殖健康和性健康方面。加剧这些问题，自闭症妇女面临的医疗保健 妇女在获得保健服务方面的差距。在北方加州的凯撒医疗机构（KPNC）， 综合医疗保健系统，我们发现ASD妇女利用妇科护理和宫颈癌， 筛查率几乎是ADHD或典型神经发育女性的一半。目标1审查哪些 因素，包括社会人口特征，医疗和精神状况，以及其他类型的 保健利用可能导致自闭症妇女对不同类型的妇科保健利用不足。目的2 将研究ASD妇女怀孕的流行病学，以及自闭症妇女是否也经历 产科护理方面的差距，这一领域基本上没有得到充分研究。我们将对女性进行取样， 使用病例对照研究设计。目前有2600名成年女性在KPNC自闭症登记处 其中有350名孕妇。这一人口正在急剧增长， 被诊断患有ASD的儿童成年。我们将研究产科/妇科的差异 利用率，包括1月份的访视频率和次数、程序和处方 二零一六年至二零二零年十二月。我们将检查追溯到1995年的怀孕史， 建立了门诊病人数据库。使用多变量logistic回归，我们将检查是否有因素 例如种族/民族、ASD诊断时的年龄以及精神和身体健康状况与 ASD女性与对照组的妇科护理利用率比较。我们还将描述 妊娠和产科护理利用的流行病学，包括妊娠期超声和筛查 与对照组相比，自闭症女性中的糖尿病患者。鉴于COVID-19对医疗保健的影响，我们将 进行一项分析，重点是2020年的护理服务，以探讨向远程医疗的转变可能是如何实现的。 影响有ASD和没有ASD的女性之间的OB/GYN护理差异。研究结果将告知 制定战略，以提高提供者的知识，护理实践和有效的产科/妇科 为患有ASD的成年女性提供医疗保健服务。