Browsing by Author "Evans, Paula"

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    Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers.
    (American journal on intellectual and developmental disabilities, 2023-05) Zigler, Christina K; Lucas, Nicole; McFatrich, Molly; Gordon, Kelly L; Jones, Harrison N; Berent, Allyson; Panagoulias, Jennifer; Evans, Paula; Reeve, Bryce B
    Communication deficits have a substantial impact on quality of life for individuals with Angelman syndrome (AS) and their families, but limited qualitative work exists to support the necessary content of measures aiming to assess communication for these individuals. Following best practices for concept elicitation studies, we conducted individual qualitative interviews with caregivers and clinicians to elicit meaningful aspects of communication for individuals with AS. Caregivers were able to discuss their child's specific communication behaviors within a large number of expressive, receptive, and pragmatic functions via numerous symbolic and non-symbolic modalities. These results aligned well with published literature on communication in AS and will be used to inform the design of a novel caregiver-reported measure. Future studies on communication in individuals with AS should focus on gathering quantitative data from large samples of diverse caregivers, which would allow for estimations of the frequency of specific behaviors across the population.
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    Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.
    (American journal on intellectual and developmental disabilities, 2023-05) Zigler, Christina K; Lin, Li; McFatrich, Molly; Lucas, Nicole; Gordon, Kelly L; Jones, Harrison N; Berent, Allyson; Panagoulias, Jennifer; Evans, Paula; Reeve, Bryce B
    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.