Autism Access Link for Early Referral and Treatment
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 148
- 试验地点
- 2
- 主要终点
- Change in Parenting stress
研究概览
简要总结
Autism Access Link for Early Referral and Treatment [ALERT], the intervention proposed in this application, is a novel state-wide referral and case management platform that PCPs can activate to ensure that a child with suspected ASD receives all necessary ASD diagnosis and treatment resources in a single referral, radically simplifying a complex diagnostic and treatment process. We hypothesize that Autism ALERT will have strong acceptability and high rates of use among primary care providers as well as among diverse low-income patients of children at risk for ASD, and that we will see higher rates of child ASD educational evaluations within six months, and shorter time between referral and ASD treatment, compared with our control.
详细描述
Though significant research effort has focused on autism spectrum disorder (ASD) screening, less attention has been devoted to optimizing follow-up of children who are subsequently identified as at-risk. Despite increases in ASD screening rates, many children with ASD wait years between when autism is suspected in the primary care setting and when definitive diagnosis and treatment begin. Delayed and missed diagnoses are particularly problematic for low-income and racial/ethnic minority children in the US, who experience higher rates of these adverse outcomes. In this project, we propose to pilot test Autism Access Link to Early Referral and Treatment (Autism ALERT), a statewide monitoring and case management program to accelerate access to ASD diagnosis and treatment among children with suspected ASD the primary care setting. The system will reduce the time between identification of suspected ASD in the primary care setting and establishment of ASD diagnosis and treatment services, by reducing family barriers to care, decreasing primary care provider burdens, and simplifying referral processes. The program will be available to any Oregon child age 12-54 months, regardless of health system or payor type. Autism ALERT will become part of the Help Me Grow national network, which gives it potential for statewide and national spread. In this proposed research, we will pilot test Autism ALERT by comparing it to an existing ASD screening intervention in 6 Oregon primary care practices. Primary goals of this pilot project are to assess feasibility and acceptability of Autism ALERT for primary care providers and families, to test the mechanism of action of Autism ALERT, to pilot test efficacy in reducing time to autism diagnosis and treatment, and to test fidelity of protocol implementation. If successful, this project will be expanded into an implementation/effectiveness R01 in which the program will be tested throughout the state of Oregon. In the long term, this research will result in a sustainable, evidence-based statewide and ultimately national monitoring system children with suspected ASD.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Health Services Research
- 盲法
- None
入排标准
- 年龄范围
- 12 Months 至 54 Months（Child）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •child's primary care provider suspects the child has ASD, child is patient at one of the study clinics, child age 12 to 54 months, family speaks English or Spanish, no prior ASD medical diagnosis or ASD diagnostic evaluation
排除标准
- •Previous diagnosis of ASD or prior diagnostic evaluation for ASD.
结局指标
主要结局
Change in Parenting stress
时间窗: At enrollment and 6 months after enrollment
Questionnaire on Resources and stress - Short Form
Change in satisfaction with Care Coordination in general and for autism in particular
时间窗: At enrollment and study end (~9 months after enrollment)
2 separate provider survey measures
Change in Parent stress
时间窗: At enrollment and 6 months after enrollment
Parent Survey - Parenting Stress Index
Change in Family Empowerment
时间窗: At enrollment and 6 months after enrollment
Parent Survey - Family Empowerment Scale, Family Subscale
Change in Family Centered and Coordinated Care
时间窗: At enrollment and 6 months after enrollment
Parent Survey - Items from National Survey of Children's Health, Medical Home item set
Family Satisfaction with Program
时间窗: 6 months after enrollment - Autism ALERT + Screening arm only
Parent Survey items - Satisfaction with Interpersonal Relationship with Navigator (PSN-I), Client Satisfaction Questionnaire - 8
% referred to program who complete an ASD educational evaluation within 6 months
时间窗: 6 months after enrollment
Administrative data - Oregon Early Intervention/Early Childhood Special Ed (EI/ECSE) database
Family self-reported ASD knowledge
时间窗: At enrollment and 9 months after enrollment
5-item survey measure
Time from EI/ECSE referral to ASD treatment in EI/ECSE, among children with ASD
时间窗: measured 9 months after enrollment
Administrative data - Oregon EI/ECSE database
Change in provider self-efficacy about autism management
时间窗: At enrollment and at study end (~9 months after enrollment)
1-item survey measure
次要结局
- Change in provider autism paperwork burden(At enrollment and at study end (~9 months after enrollment))
- Time from EI/ECSE referral to evaluation among children with ASD(measured 9 months after enrollment)
- % with ASD determination receiving ASD services 6 months after enrollment(measured 9 months after enrollment)
- Age of EI/ECSE educational determination, among children with ASD(measured 9 months after enrollment)
- monthly service hours among children with ASD 6 months after enrollment(measured 9 months after enrollment)
- age of ASD medical diagnosis among children on Medicaid(Measured 1 year after study enrollment)
- % with ASD medical diagnosis receiving ASD therapy 6 months after enrollment, among children on Medicaid(Measured 1 year after study enrollment)
研究者
Katharine Zuckerman, MD MPH
Principal Investigator
Oregon Health and Science University