Person-Centered Assessment and Monitoring Systems (PCAMS)

Person-Centered Assessment and Monitoring Systems (PCAMS)

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.

Study Overview

• Status: Completed
• Conditions: Autism Spectrum Disorder
• Intervention / Treatment: Other: PCAMS assessments

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 Type: Interventional
• Enrollment (Actual): 60
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Pennsylvania
    • Hershey, Pennsylvania, United States, 17033
      • The Penn State College of Medicine

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

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 Plan

How is the study designed?

Design Details

• Primary Purpose: Health Services Research
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

What is the study measuring?

Primary Outcome Measures

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

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
PROMIS measures	Patient-Reported Outcomes Measurement Information System	quarterly over 2 years
Elected Reporter Community Engagement measure		semi-annually over 2 years

Collaborators and Investigators

• Sponsor: Milton S. Hershey Medical Center
• Collaborators: Pennsylvania Bureau of Autism Services
• Investigators: Principal Investigator: Michael J Murray, M.D., Hershey Medical Center

Study record dates

Study Major Dates

• Study Start: July 1, 2016
• Primary Completion (Actual): August 1, 2019
• Study Completion (Actual): August 1, 2019

Study Registration Dates

• First Submitted: January 11, 2017
• First Submitted That Met QC Criteria: January 11, 2017
• First Posted (Estimate): January 13, 2017

Study Record Updates

• Last Update Posted (Actual): April 8, 2020
• Last Update Submitted That Met QC Criteria: April 6, 2020
• Last Verified: April 1, 2020

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Neurodevelopmental Disorders; Child Development Disorders, Pervasive; Autism Spectrum Disorder
• Other Study ID Numbers: STUDY00004326

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO