Autism Spectrum Disorder Parent Report for Outcome Monitoring: A Preliminary Report of Development and Clinical...

Area of Science:

• Pediatric developmental disorders
• Clinical psychology
• Healthcare informatics

Background:

• Children with autism spectrum disorder (ASD) experience challenges in multiple functional areas.
• Effective clinical tools are needed to monitor developmental changes and inform interventions for ASD.
• Patient-centered and efficient care requires timely and relevant clinical information.

Purpose of the Study:

• To evaluate the clinical utility and preliminary psychometric properties of the ASD Parent Report for Outcome Monitoring (ASD-PROM).
• To assess the ASD-PROM's ability to measure core ASD features, associated concerns, and comorbidities.
• To determine the tool's effectiveness in improving patient-centered and efficient clinical care for children with ASD.

Main Methods:

• The ASD-PROM was developed by an interdisciplinary team with iterative revisions based on parent feedback.
• Parents of 62 children with ASD completed the ASD-PROM before clinical visits; test-retest reliability was assessed with 53 participants.
• Concurrent validity was examined using the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) with 48 participants; utility was assessed via post-visit surveys with parents and clinicians.

Main Results:

• Parents rated ASD-PROM items as highly descriptive of their child's abilities (median=8.0) and reported a positive effect on care (median=8.0).
• Clinicians found the ASD-PROM effective for assessing parent-reported abilities (median=9.0) and enhancing care efficiency and patient-centeredness (median=8.0).
• The ASD-PROM demonstrated acceptable two-week test-retest reliability (0.95) and moderate positive correlations with Vineland-II scores (r=0.30-0.50).

Conclusions:

• The ASD-PROM is a free, web-based tool for pre-visit information gathering in pediatric ASD specialty care.
• Preliminary findings suggest promising clinical utility and psychometric properties for the ASD-PROM.
• Further research is needed to address limitations, including response rates and potential modifications, to optimize its use across diverse age groups and developmental levels.