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| Name | Class |
|---|---|
| Pennsylvania Bureau of Autism Services | OTHER |
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An analysis of data for adolescents and young adults diagnosed with Autism Spectrum Disorders (ASDs) who are evaluated as part of the Care Coordination, Assessment, and Responsive Engagement for transition-aged adolescents (t-CARE) program which replaced the former Autism Life Care Model (ALCM), which was a clinical program implemented between Fall 2014 and April 2016. The individuals enrolled in the program will be administered a standardized assessment battery during each visit with the care coordinator or study coordinator. The proposed study will analyze data gathered during each of the assessment periods in order to check the efficacy and viability of the protocol.
Current collaboration between individuals, families, and providers through in-person meetings are extremely infrequent, costly, and occur most often when providers are intimately involved as part of a multidisciplinary team in a single setting such as at a school. Often, little information is transmitted between providers and/or school personnel in determining treatment goals and interventions. Furthermore, the transmission of information is often provider to provider or school personnel to provider, which excludes direct patient-input and lessens transparency in decision making. In an effort to improve current care and therefore improve successful adult transitions for adolescents with ASD, t-CARE is designed to mimic multidisciplinary team meetings. These meetings are incredibly impactful as they include direct individual and family involvement through facilitated information-sharing, while also maintaining patient-centered care across multiple providers and complex systems of care.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Care Coordination Visit | Behavioral | This is a longitudinal study. Adolescents or young adults with autism will participate in this study. Participants will be required to complete a baseline of assessment measures at enrollment and then monthly assessments (described in the study procedures below) during the first (approximately) 10-15 minutes of each visit with the t-CARE coordinator. The remainder of the visit will focus on care coordination and clinical treatment goals. |
| Measure | Description | Time Frame |
|---|---|---|
| Holmes and Rahe Stress Scale | annually over 2 years | |
| SRS-2 | annually over 2 years | |
| Waisman Activities of Daily Living Scale | annually over 2 years | |
| Intolerance of Uncertainty | annually over 2 years | |
| PROMIS Multi-Domain 49 | monthly over 2 years | |
| Temple University Community Participation (TUCP) measure | quarterly over 2 years | |
| PROMIS proxy measures | quarterly over 2 years | |
| PROMIS SF measures | monthly over 2 years | |
| Self-Determination Scale | annually over 2 years |
| Measure | Description | Time Frame |
|---|---|---|
| Closure Survey | after completion of 2 year study |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Michael J. Murray, M.D. | Hershey Medical Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| The Penn State College of Medicine | Hershey | Pennsylvania | 17033 | United States |
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| ID | Term |
|---|---|
| D000067877 | Autism Spectrum Disorder |
| ID | Term |
|---|---|
| D002659 | Child Development Disorders, Pervasive |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
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