Becerra Tracy A, Massolo Maria L, Yau Vincent M, Owen-Smith Ashli A, Lynch Frances L, Crawford Phillip M, Pearson Kathryn A, Pomichowski Magdalena E, Quinn Virginia P, Yoshida Cathleen K, Croen Lisa A
Postdoctoral Research Fellow at the Department of Research & Evaluation for Kaiser Permanente Southern California in Pasadena.
Senior Research Project Manager for the Division of Research in Oakland, CA.
Perm J. 2017;21:16-009. doi: 10.7812/TPP/16-009.
Autism spectrum disorders (ASD) are lifelong neurodevelopmental disorders, and little is known about how parents address the health and psychosocial consequences of ASD. Few studies have examined use of various treatments and services in a large, diverse sample of children with ASD and their families.
This paper presents methods to create an autism research resource across multiple large health delivery systems and describes services and treatments used by children with ASD and their families.
Four study sites conducted a Web survey of parents of children and adolescents with ASD who were members of Kaiser Permanente. We tabulated data distributions of survey responses and calculated χ statistics for differences between responders and nonresponders.
The children of the 1155 respondents were racially and ethnically diverse (55% white, 6% black, 5% Asian, 9% multiracial, 24% Hispanic) and representative of the total population invited to participate with respect to child sex (83% male), child age (57% < 10 years), and ASD diagnosis (64% autistic disorder). The most frequently used services and treatments were Individualized Education Programs (85%), family physician visits (78%), and occupational and speech therapy (55% and 60%, respectively). Home-based programs frequently included implementation of social skills training (44%) and behavior management (42%). Prescription medication use was high (48%). Caregivers reported disruption of personal and family routines because of problem behaviors.
These survey data help to elucidate parents' experiences with health services for their children with ASD and serve as a potential resource for future research.
自闭症谱系障碍（ASD）是一种终身性神经发育障碍，目前对于家长如何应对ASD对健康和心理社会方面造成的影响知之甚少。很少有研究在大量、多样化的ASD患儿及其家庭样本中考察各种治疗方法和服务的使用情况。
本文介绍了在多个大型医疗服务系统中创建自闭症研究资源的方法，并描述了ASD患儿及其家庭所使用的服务和治疗方法。
四个研究地点对作为凯撒医疗集团成员的ASD儿童及青少年的家长进行了网络调查。我们将调查回复的数据分布制成表格，并计算了回复者与未回复者之间差异的χ统计量。
1155名受访者的孩子在种族和民族上具有多样性（55%为白人，6%为黑人，5%为亚洲人，9%为多种族，24%为西班牙裔），在孩子性别（83%为男性）、孩子年龄（57%小于10岁）和ASD诊断（64%为自闭症障碍）方面代表了受邀参与的总体人群。最常用的服务和治疗方法是个性化教育计划（85%）、看家庭医生（78%）以及职业和言语治疗（分别为55%和60%）。家庭项目经常包括实施社交技能训练（44%）和行为管理（42%）。处方药的使用率很高（48%）。照顾者报告称，由于问题行为，个人和家庭日常活动受到了干扰。
这些调查数据有助于阐明家长为其ASD患儿寻求医疗服务的经历，并可作为未来研究的潜在资源。
