Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.
dc.contributor.author | Zigler, Christina K | |
dc.contributor.author | Lin, Li | |
dc.contributor.author | McFatrich, Molly | |
dc.contributor.author | Lucas, Nicole | |
dc.contributor.author | Gordon, Kelly L | |
dc.contributor.author | Jones, Harrison N | |
dc.contributor.author | Berent, Allyson | |
dc.contributor.author | Panagoulias, Jennifer | |
dc.contributor.author | Evans, Paula | |
dc.contributor.author | Reeve, Bryce B | |
dc.date.accessioned | 2023-05-02T13:05:53Z | |
dc.date.available | 2023-05-02T13:05:53Z | |
dc.date.issued | 2023-05 | |
dc.date.updated | 2023-05-02T13:05:53Z | |
dc.description.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. | |
dc.identifier | 492586 | |
dc.identifier.issn | 1944-7515 | |
dc.identifier.issn | 1944-7558 | |
dc.identifier.uri | ||
dc.language | eng | |
dc.relation.ispartof | American journal on intellectual and developmental disabilities | |
dc.relation.isversionof | 10.1352/1944-7558-128.3.204 | |
dc.subject | Angelman syndrome | |
dc.subject | caregivers | |
dc.subject | children | |
dc.subject | communication | |
dc.subject | validation | |
dc.title | Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome. | |
dc.type | Journal article | |
duke.contributor.orcid | Zigler, Christina K|0000-0002-8996-7757 | |
duke.contributor.orcid | Jones, Harrison N|0000-0002-4171-980X | |
duke.contributor.orcid | Reeve, Bryce B|0000-0002-6709-8714 | |
pubs.begin-page | 204 | |
pubs.end-page | 218 | |
pubs.issue | 3 | |
pubs.organisational-group | Duke | |
pubs.organisational-group | School of Medicine | |
pubs.organisational-group | Clinical Science Departments | |
pubs.organisational-group | Head and Neck Surgery & Communication Sciences | |
pubs.publication-status | Accepted | |
pubs.volume | 128 |
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