Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.
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2023-05
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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.
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Zigler, Christina K, Li Lin, Molly McFatrich, Nicole Lucas, Kelly L Gordon, Harrison N Jones, Allyson Berent, Jennifer Panagoulias, et al. (2023). Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome. American journal on intellectual and developmental disabilities, 128(3). pp. 204–218. 10.1352/1944-7558-128.3.204 Retrieved from https://hdl.handle.net/10161/27288.
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Christina Kelsey Zigler
Dr. Zigler is an independent investigator dedicated to improving the ways we measure patient-centered, meaningful health states, specializing in pediatrics, rare diseases, and clinical trials. She also is a methodological co-investigator who supports the application of novel statistical approaches and measurement strategies across a diverse array of studies.
Her methodological expertise includes established qualitative and quantitative techniques (i.e. concept elicitation, cognitive testing, classical test theory, item-response theory) alongside innovative methods (i.e. novel ways to identify meaningful change), to ensure the measures are ultimately centered in the patients’ meaningful experiences. Further, she works in a variety of populations and contexts, including pediatrics, where patient-reported outcome measures empower children to report directly on their own health status, and rare diseases, where a creative and pragmatic approach to measure development is necessary and patient-centeredness is essential.
Areas of Expertise: Health Measurement, Health Behavior, and Health Services Research
Harrison N. Jones
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