Autism Spectrum Disorder
Conditions
Brief summary
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.
Detailed description
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.
Interventions
BEHAVIORALCare Coordination Visit
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.
Sponsors
Pennsylvania Bureau of Autism Services
Milton S. Hershey Medical Center
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
14 Years to 19 Years
Healthy volunteers
Yes
Inclusion criteria
1. Between 14 and 19 years of age upon entry into t-CARE 2. A primary diagnosis of Asperger's Syndrome or autism, as indicated by the Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) 3. English as primary language spoken 4. Ability to self-report (i.e. understand and answer assessment questions written at a third grade comprehension level) (self-report questions to be asked by study coordinator)
Exclusion criteria
1. A significant language delay 2. Significant psychosis as indicated through a semi-structured interview (Mini-International Neuropsychiatric Interview)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Self-Determination Scale | annually over 2 years |
| 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 |
Secondary
| Measure | Time frame |
|---|---|
| Closure Survey | after completion of 2 year study |
Countries
United States
Outcome results
None listed