Autism Spectrum Disorders
Conditions
Keywords
Patient Navigation, Health Disparities, Coordination of Services, Early Intervention (Education), Health Services Accessibility, Patient Advocacy
Brief summary
The SaLSA (Screening and Linkage to Services for Autism) study will test whether patient navigation can help disadvantaged families obtain earlier diagnosis and treatment for their children who have had a positive screening test for autism spectrum disorder. Half of the families will be offered help from an autism patient navigator. The other half will receive standard care.
Detailed description
Despite its relatively high rate of occurrence, autism spectrum disorder (ASD) is under-diagnosed and under-treated in young children, particularly in minority and disadvantaged populations. Although screening for ASD in the primary care setting is recommended as best practice, inadequate attention has been paid to addressing important obstacles to early recognition of ASD, including barriers to referral after positive screening, completion of diagnostic evaluations, and receipt of treatment. Patient navigation was originally developed to reduce health care disparities. The patient navigator guides patients with suspicious findings (e.g., a positive screening test) through and around barriers to care to ensure timely diagnosis and treatment. Patient navigation has improved receipt of preventive care among low-income, minority children but has not been tested for improving early identification and treatment of autism spectrum disorders. The goal of this study is to test the effectiveness and feasibility of patient navigation to facilitate autism screening follow-up, diagnostic evaluation, and linkage to early intervention in a very young, disadvantaged, minority population. To increase patient navigation's potential for widespread application and public health impact, this study uses the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework, a set of criteria for translating research into action, to guide planning and evaluation. The intervention's Reach, Effectiveness, Adoption, Implementation and Maintenance over time will be examined.
Interventions
The Autism Patient Navigator (APN) will interview families to determine system and individual barriers facing the family at each stage of the care process. The APN will help families to overcome any identified barriers through education, coaching, social support, interpretation or translation, linkage to resources (e.g., for obtaining insurance) or logistical support (e.g., scheduling appointments, providing reminders, arranging transportation), in order to ensure timely diagnostic evaluation / eligibility determination; educate the family about autism, tests and treatments; and offer psychosocial support.
Sponsors
Study design
Eligibility
Inclusion criteria
* Receives medical care at Denver Community Health Services (DCHS) clinic * Positive M-CHAT screening test (score 3 or higher) between ages 16 and 30 months at DCHS * Resident of City and County of Denver
Exclusion criteria
* Existing diagnosis of autism spectrum disorder * Sibling of enrolled subject
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Completion of developmental evaluation / eligibility determination | 36 months of age | Indicated developmental evaluation (aka eligibility determination) completed (Yes/No) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Individualized Family Service Plan (IFSP) development | 36 months of age | Documented development of indicated IFSP (Yes/No) |
| Age at Individualized Family Service Plan (IFSP) development | 36 months of age | Age at indicated IFSP development (months) |
| Time to Individualized Family Service Plan (IFSP) development | 36 months of age | Time from initial positive Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) screen to indicated IFSP development (days) |
| Initiation of indicated early intervention (EI) services | 36 months of age | Initiation of at least one indicated EI service (Yes/No) |
| Age at initiation of indicated early intervention services | 36 months of age | Age at initiation of any indicated EI service (months) |
| Time to referral for and implementation of developmental evaluation / eligibility determination | 36 months of age | Time from initial positive Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F screen to referral (days) and to completion of evaluation (days) |
| Age at referral for and implementation of developmental evaluation / eligibility determination | 36 months of age | Age at referral (months) and age at completion of evaluation (months) |
| Time to initiation of indicated early intervention services | 36 months of age | Time from initial positive Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) screen to initiation of any indicated EI service (days) |
| Referral for developmental evaluation / eligibility determination | 36 months of age | Referral for developmental evaluation / eligibility determination made (yes/no) |
Other
| Measure | Time frame | Description |
|---|---|---|
| Engagement in early intervention services for at least 3 months after initiation | 36 months of age | At least one indicated early intervention service received 3 or more months after initiation of EI services (Yes/No) |
| Receipt of Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) Follow-up Interview | 36 months of age | Receipt of indicated Modified Checklist for Autism in Toddlers, Revised with Follow-up (M-CHAT-R/F) (Yes/No) |
Countries
United States