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ERIC Number: EJ1387041
Record Type: Journal
Publication Date: 2023-May
Pages: 15
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1944-7515
EISSN: EISSN-1944-7558
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.
American Journal on Intellectual and Developmental Disabilities, v128 n3 p204-218 May 2023
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.
American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: https://meridian.allenpress.com/aaidd
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A