Validation of the Observer-Reported Communication Ability (ORCA) measure for individuals with Rett syndrome.

Autor: Reeve BB; Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA; Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA. Electronic address: Bryce.Reeve@duke.edu., Lucas N; Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA., Chen D; Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA., McFatrich M; Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA., Jones HN; Department of Head and Neck Surgery & Communication Sciences, Duke University School of Medicine, Durham, NC, USA., Gordon KL; Department of Speech Pathology and Audiology, Duke University Health System, Durham, NC, USA., Leiva LZ; Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA., Lin L; Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA., Coenraads M; Rett Syndrome Research Trust, Trumbull, CT, USA., von Hehn J; Rett Syndrome Research Trust, Trumbull, CT, USA., Carpenter RL; Rett Syndrome Research Trust, Trumbull, CT, USA., Marsh ED; Division of Child Neurology, Department of Pediatrics, Children's Hospital of Philadelphia and Department of Neurology, University of Pennsylvania Perelman School of Medicine Philadelphia, PA, USA., Zigler CK; Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Jazyk: angličtina
Zdroj: European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society [Eur J Paediatr Neurol] 2023 Sep; Vol. 46, pp. 74-81. Date of Electronic Publication: 2023 Jul 28.
DOI: 10.1016/j.ejpn.2023.07.007
Abstrakt: Purpose: The study goal was to validate the Observer-Reported Communication Ability (ORCA) measure for use with females with Rett Syndrome (RTT).
Methods: Qualitative interviews, including concept elicitation and cognitive interviewing methods, were conducted with 19 caregivers of individuals with RTT ages 2 and older. A quantitative study was then conducted in 279 caregivers to evaluate construct validity and reliability.
Results: After minor modifications were made, the modified ORCA measure was well understood and captured key communication concepts. Quantitative data showed evidence for reliable scores (α = 0.90, test-retest intraclass correlation = 0.88), minimal floor and no ceiling effects, and strong correlation with the Communication and Symbolic Behaviors Scale (r = 0.73).
Conclusions: This study provided initial support that the modified ORCA measure is an acceptable caregiver-reported measure of communication ability for females with RTT. Future work should include evaluation of longitudinal validity of the measure and its associations with clinician- and performance-based measures in diverse samples.
Competing Interests: Declaration of competing interest Bryce Reeve, Christina Zigler, Nicole Lucas, Molly McFatrich, Li Lin, Kelly Gordon, and Harrison Jones developed the original ORCA measure that is being used in this study. If the technology is commercially successful in the future, the developers and Duke University may benefit financially.
(© 2023 Published by Elsevier Ltd on behalf of European Paediatric Neurology Society.)
Databáze: MEDLINE
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