Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Name | Class |
|---|---|
| Providence Health & Services | OTHER |
Not provided
Not provided
Not provided
Not provided
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 parents of children at risk for ASD, and that we will see increased rate of child ASD educational evaluations within six months, and shortened time between referral and ASD treatment.
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.
The Autism Access Link to Early Referral and Treatment (Autism ALERT) program is 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. Following an initial pilot trial, we propose implementing the intervention to families in the Portland metropolitan area before expanding the program elsewhere in the state. 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 undertake a single arm implementation/effectiveness trial in which the program will be tested throughout the state of Oregon, beginning in the Portland metropolitan area. In the long term, this research will result in a sustainable, evidence-based statewide and ultimately national monitoring system children with suspected ASD.
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Screening + Autism ALERT | Families with children under 54 months, without a medical ASD diagnosis, who are referred by an autism clinic or primary care provider to Autism ALERT |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Autism ALERT | Other | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| Change in satisfaction with Care Coordination in general and for autism in particular | 2 separate provider survey measures | At enrollment and study end (~9 months after enrollment) |
| Change in Parent stress | Parent Survey - Parenting Stress Index | At enrollment and 6 months after enrollment |
| Change in Parenting stress | Questionnaire on Resources and stress - Short Form | At enrollment and 6 months after enrollment |
| Change in Family Empowerment | Parent Survey - Family Empowerment Scale, Family Subscale | At enrollment and 6 months after enrollment |
| Change in Family Centered and Coordinated Care | Parent Survey - Items from National Survey of Children's Health, Medical Home item set | At enrollment and 6 months after enrollment |
| Family Satisfaction with Program | Parent Survey items - Satisfaction with Interpersonal Relationship with Navigator (PSN-I), Client Satisfaction Questionnaire - 8 | 6 months after enrollment |
| % referred to program who complete an ASD educational evaluation within 6 months | Administrative data - Oregon Early Intervention/Early Childhood Special Ed (EI/ECSE) database | 6 months after enrollment |
| Measure | Description | Time Frame |
|---|---|---|
| Change in provider autism paperwork burden | Provider survey item | At enrollment and at study end (~9 months after enrollment) |
| Time from EI/ECSE referral to evaluation among children with ASD | Administrative data - Oregon EI/ECSE database |
Not provided
Inclusion Criteria:
Exclusion Criteria:
- Previous diagnosis of ASD or prior diagnostic evaluation for ASD.
Not provided
Not provided
Families with a child aged 12-54 months who are suspected to have autism by a primary care provider who have not received a medical autism diagnosis or a prior diagnostic autism evaluation. Initially restricted to residents of the Multnomah, Clackamas, or Washington counties of Oregon.
Not provided
Not provided
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Ohsu Cdrc | Portland | Oregon | 97239 | United States |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot | Yes | No | No | Study Protocol | Dec 5, 2023 | Jan 30, 2024 | Prot_000.pdf |
Not provided
| ID | Term |
|---|---|
| D000067877 | Autism Spectrum Disorder |
| ID | Term |
|---|---|
| D002659 | Child Development Disorders, Pervasive |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
Not provided
Not provided
| ID | Term |
|---|---|
| D013812 | Therapeutics |
| D002110 | Caffeine |
| ID | Term |
|---|---|
| D014970 | Xanthines |
| D000470 | Alkaloids |
| D006571 | Heterocyclic Compounds |
| D011688 | Purinones |
Not provided
Not provided
Not provided
Not provided
Not provided
|
|
| Time from EI/ECSE referral to ASD treatment in EI/ECSE, among children with ASD | Administrative data - Oregon EI/ECSE database | measured 9 months after enrollment |
| Family self-reported ASD knowledge | 5-item survey measure | At enrollment and 9 months after enrollment |
| Change in provider self-efficacy about autism management | 1-item survey measure | At enrollment and at study end (~9 months after enrollment) |
| measured 9 months after enrollment |
| Age of EI/ECSE educational determination, among children with ASD | Administrative data - Oregon EI/ECSE database | measured 9 months after enrollment |
| % with ASD determination receiving ASD services 6 months after enrollment | Administrative data - Oregon EI/ECSE database | measured 9 months after enrollment |
| monthly service hours among children with ASD 6 months after enrollment | Administrative data - Oregon EI/ECSE database | measured 9 months after enrollment |
| age of ASD medical diagnosis among children on Medicaid | Administrative data - Medicaid claims | Measured 1 year after study enrollment |
| % with ASD medical diagnosis receiving ASD therapy 6 months after enrollment, among children on Medicaid | Administrative data - Medicaid claims | Measured 1 year after study enrollment |
| D011687 |
| Purines |
| D006574 | Heterocyclic Compounds, 2-Ring |
| D000072471 | Heterocyclic Compounds, Fused-Ring |