Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.

Zigler, Christina K

Lin, Li

McFatrich, Molly

Lucas, Nicole

Gordon, Kelly L

Jones, Harrison N

Berent, Allyson

Panagoulias, Jennifer

Evans, Paula

Reeve, Bryce B

2023-05-02T13:05:53Z

2023-05-02T13:05:53Z

2023-05

2023-05-02T13:05:53Z

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.

492586

1944-7515

1944-7558

https://hdl.handle.net/10161/27288

eng

American journal on intellectual and developmental disabilities

10.1352/1944-7558-128.3.204

Angelman syndrome

caregivers

children

communication

validation

Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.

Journal article

Zigler, Christina K|0000-0002-8996-7757

Jones, Harrison N|0000-0002-4171-980X

Reeve, Bryce B|0000-0002-6709-8714

204

218

3

Duke

School of Medicine

Clinical Science Departments

Head and Neck Surgery & Communication Sciences

Accepted

128