Details

Autor(en) / Beteiligte

• Zigler, Christina K
• Lin, Li
• McFatrich, Molly
• Lucas, Nicole
• Gordon, Kelly L
• Jones, Harrison N
• Berent, Allyson
• Panagoulias, Jennifer
• Evans, Paula
• Reeve, Bryce B

Titel

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

Ist Teil von

• American journal on intellectual and developmental disabilities, 2023-05, Vol.128 (3), p.204-218

Ort / Verlag

United States: American Association on Intellectual and Developmental Disabilities

Erscheinungsjahr

2023

Quelle

Applied Social Sciences Index & Abstracts (ASSIA)

Beschreibungen/Notizen

• 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[greater than or equal to]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.