Clinical trial NCT03019952: Effectiveness of the Care Coordination, Assessment, and Responsive Engagement Program for Transition-aged Adolescents (t-CARE) With ASD
Official title: Effectiveness of the Care Coordination, Assessment, and Responsive Engagement Program for Transition-aged Adolescents (t-CARE) With ASD
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Autism Spectrum Disorder
Lead sponsor: Milton S. Hershey Medical Center
Sponsor class: OTHER
Collaborators: name: Pennsylvania Bureau of Autism Services
First posted: 2017-01-13
Enrollment: 52
Sex: ALL
Minimum age (years): 14
Maximum age (years): 19
Standard ages: CHILD
ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: HEALTH_SERVICES_RESEARCH

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.

Eligibility criteria: 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)

Primary outcomes:
measure: Holmes and Rahe Stress Scale
timeFrame: annually over 2 years
measure: SRS-2
timeFrame: annually over 2 years
measure: Waisman Activities of Daily Living Scale
timeFrame: annually over 2 years
measure: Intolerance of Uncertainty
timeFrame: annually over 2 years
measure: PROMIS Multi-Domain 49
timeFrame: monthly over 2 years
measure: Temple University Community Participation (TUCP) measure
timeFrame: quarterly over 2 years
measure: PROMIS proxy measures
timeFrame: quarterly over 2 years
measure: PROMIS SF measures
timeFrame: monthly over 2 years
measure: Self-Determination Scale
timeFrame: annually over 2 years
Secondary outcomes:
measure: Closure Survey
timeFrame: after completion of 2 year study
Other outcomes:
Locations:
city: Hershey
country: United States
facility: The Penn State College of Medicine
state: Pennsylvania
Study officials:
affiliation: Hershey Medical Center
name: Michael J. Murray, M.D.
role: PRINCIPAL_INVESTIGATOR
References: