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

Publication ,  Journal Article
Zigler, CK; Lin, L; McFatrich, M; Lucas, N; Gordon, KL; Jones, HN; Berent, A; Panagoulias, J; Evans, P; Reeve, BB
Published in: American journal on intellectual and developmental disabilities
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 > 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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Published In

American journal on intellectual and developmental disabilities

DOI

EISSN

1944-7558

ISSN

1944-7515

Publication Date

May 2023

Volume

128

Issue

3

Start / End Page

204 / 218

Related Subject Headings

  • Reproducibility of Results
  • Rehabilitation
  • Humans
  • Communication
  • Child, Preschool
  • Caregivers
  • Angelman Syndrome
  • 52 Psychology
  • 39 Education
  • 32 Biomedical and clinical sciences
 

Citation

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Chicago
ICMJE
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Zigler, C. K., Lin, L., McFatrich, M., Lucas, N., Gordon, K. L., Jones, H. N., … Reeve, B. B. (2023). Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome. American Journal on Intellectual and Developmental Disabilities, 128(3), 204–218. https://doi.org/10.1352/1944-7558-128.3.204
Zigler, Christina K., Li Lin, Molly McFatrich, Nicole Lucas, Kelly L. Gordon, Harrison N. Jones, Allyson Berent, Jennifer Panagoulias, Paula Evans, and Bryce B. Reeve. “Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.American Journal on Intellectual and Developmental Disabilities 128, no. 3 (May 2023): 204–18. https://doi.org/10.1352/1944-7558-128.3.204.
Zigler CK, Lin L, McFatrich M, Lucas N, Gordon KL, Jones HN, et al. Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome. American journal on intellectual and developmental disabilities. 2023 May;128(3):204–18.
Zigler, Christina K., et al. “Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.American Journal on Intellectual and Developmental Disabilities, vol. 128, no. 3, May 2023, pp. 204–18. Epmc, doi:10.1352/1944-7558-128.3.204.
Zigler CK, Lin L, McFatrich M, Lucas N, Gordon KL, Jones HN, Berent A, Panagoulias J, Evans P, Reeve BB. Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome. American journal on intellectual and developmental disabilities. 2023 May;128(3):204–218.

Published In

American journal on intellectual and developmental disabilities

DOI

EISSN

1944-7558

ISSN

1944-7515

Publication Date

May 2023

Volume

128

Issue

3

Start / End Page

204 / 218

Related Subject Headings

  • Reproducibility of Results
  • Rehabilitation
  • Humans
  • Communication
  • Child, Preschool
  • Caregivers
  • Angelman Syndrome
  • 52 Psychology
  • 39 Education
  • 32 Biomedical and clinical sciences