Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome
Christina K. Zigler, Li Lin, Molly McFatrich, Nicole Lucas, Kelly L. Gordon, Harrison N. Jones, Allyson Berent, Jennifer Panagoulias, Paula Evans, Bryce B. Reeve- Psychiatry and Mental health
- Neurology (clinical)
- Arts and Humanities (miscellaneous)
- Developmental and Educational Psychology
- Neuropsychology and Physiological Psychology
- General Medicine
- Pediatrics, Perinatology and Child Health
Abstract
There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS > 2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.