Improving Transition Outcomes for Youth With ASD in a Medicaid Accountable Care Organization

Boston Medical Center (BMC)

Status: Withdrawn

Conditions: Autism Spectrum Disorder

Treatments: Other: Usual care; Behavioral: PSE intervention; Other: 'Got Transition' toolkit and resources

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT04869540

5K18MH120457 (U.S. NIH Grant/Contract)

H-41693

Details and patient eligibility

About

Despite an increasing number of children with Autism Spectrum Disorder (ASD), fragmentation across child and adult service systems results in poor education, employment and health outcomes for transition-aged youth (TAY). The investigators will develop a transition intervention embedded in a series of systems-level strategies currently being deployed in a large Medicaid Accountable Care Organization (ACO). The investigators will conduct a randomized pilot study of 40 families of TAY with ASD. All families will receive care by providers trained in the Got Transition toolkit (the systems level component of the intervention) and have access to web-based transition resources. Families in the 'intervention refinement' arm will also receive a family-based problem solving education (PSE) intervention.

Full description

This is a randomized pilot study of 40 families of TAY with ASD. Families will be randomly allocated to study arms - not for the purpose of maximizing internal validity; but rather, to allow us to refine recruitment techniques that maximize the acceptability of randomization. Twenty families in the 'intervention refinement' arm will receive a PSE-based intervention; among this group, the model will be refined in real time - based on both experience delivering the intervention and ongoing qualitative data collection. Refinement arm participants will receive a PSE prototype based on prior initial adaptations.

Each pilot family will also be asked to participate in a semi-structured interview. The interviews will be conducted after families have experienced at least 3 PSE sessions and use their data to further refine the model and develop hypotheses concerning testable intervention targets.

Among 20 families in a control-like 'parameter estimation' arm, empiric estimates will be obtained of study parameters key to the design of a future trial. All families in this arm will receive care from providers trained in the Got Transition toolkit, and will have access to web-based resources for creating a young adult vision statement and for accessing multiple service sectors. Participants will be tracked over six-months. Consistent with pilot methods, the analysis will not emphasize comparisons across study arms

Sex: All

Ages: 14+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

Caregivers 18+ and transition aged youth with autism ages 14-20

Inclusion Criteria:

• Speak English or Spanish

Exclusion Criteria:

• Foster families
• Families in which a parent has either serious mental illness or limited cognitive capacity

Trial design

Primary purpose: Health Services Research

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: Single Blind

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0 participants in 2 patient groups

Usual care

Active Comparator group

Description:

Families randomized to this arm will receive the usual care by providers trained in the 'Got Transition' toolkit and that have access to web-based transition resources.

Treatment:

Other: Usual care

Other: 'Got Transition' toolkit and resources

Usual care + PSE

Experimental group

Description:

Families randomized to this arm will receive the usual care by providers trained in the 'Got Transition' toolkit and that have access to web-based transition resources and will also receive a family-based problem solving eduction (PSE) intervention.

Treatment:

Behavioral: PSE intervention

Other: Usual care

Other: 'Got Transition' toolkit and resources