Person-Centered Assessment and Monitoring Systems

Not Applicable

Completed

• Conditions: Autism Spectrum Disorder

• Registration Number: NCT03019978
• Lead Sponsor: Milton S. Hershey Medical Center

Brief Summary

The proposed study will include an analysis of data for residents of Pennsylvania who are age 21 and older, have a diagnosis of Autism Spectrum Disorder (ASD), and are enrolled in the Commonwealth's Adult Community Autism Program (ACAP). The individuals enrolled in the program will be administered a standardized assessment battery quarterly for two years. The proposed study will analyze the data gathered during each of the assessment periods in order to aid in service/treatment planning, assess for individual improvements, and ultimately measure treatment outcomes.

Detailed Description

The proposed study seeks to more closely monitor the changing needs and challenges of adults with ASD, which will be facilitated through a battery of assessments given over quarterly time points in a two year time period. Investigators seek to address whether increased frequency of behaviorally driven assessments will inform treatment. More specifically, investigators are interested in knowing if the assessment data influences treatment planning with providers or if it is guiding any decisions about treatment once data is returned to participants in a meaningful way which is easily understood. If data prompts treatment changes, the study will examine whether improvements are being shown months or even years later.

An "elected reporter", a family member, is asked to take part in the research study with the participant. An elected reporter is asked to complete several questionnaires quarterly, both reporting on themself and the participant.

Study Timeline

• Study Start: 2016-07
• Study First Submitted: 2017-01-11
• Study First Submitted QC: 2017-01-11
• Study First Posted: 2017-01-13
• Primary Completion: 2019-08
• Study Completion: 2019-08
• Status Verified: 2020-04
• Last Update Submitted: 2020-04-06
• Last Update Posted: 2020-04-08

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 60

Inclusion Criteria

• Enrolled in Pennsylvania's Adult Community Autism Program (ACAP), > 18 years of age
• English as primary language spoken
• Ability to self-report (i.e. understand and answer assessment questions written at a third grade comprehension level)
• Have an Elected Reporter

Exclusion Criteria

-Inability to provide consent

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: SINGLE_GROUP

Primary Outcome Measures

Name	Time	Method
Community Engagement measure	semi-annually over 2 years
Social Responsiveness Scale- 2	annually over 2 years
Additional PROMIS measures	quarterly over 2 years	Patient-Reported Outcomes Measurement Information System
Adult Behavior Checklist	annually over 2 years

Secondary Outcome Measures

Name	Time	Method
PROMIS measures	quarterly over 2 years	Patient-Reported Outcomes Measurement Information System
Elected Reporter Community Engagement measure	semi-annually over 2 years

Trial Locations

Locations (1)

The Penn State College of Medicine; 🇺🇸 Hershey, Pennsylvania, United States