Clinical trial NCT03019978: Person-Centered Assessment and Monitoring Systems
Official title: Person-Centered Assessment and Monitoring Systems (PCAMS)
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: 60
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: HEALTH_SERVICES_RESEARCH

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.

Eligibility criteria: 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

Primary outcomes:
measure: Social Responsiveness Scale- 2
timeFrame: annually over 2 years
measure: Adult Behavior Checklist
timeFrame: annually over 2 years
measure: Additional PROMIS measures
timeFrame: quarterly over 2 years
measure: Community Engagement measure
timeFrame: semi-annually over 2 years
Secondary outcomes:
measure: PROMIS measures
timeFrame: quarterly over 2 years
measure: Elected Reporter Community Engagement measure
timeFrame: semi-annually over 2 years
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: