针对雷特综合征患者的观察者报告沟通能力（ORCA）测量方法的验证。
Validation of the Observer-Reported Communication Ability (ORCA) measure for individuals with Rett syndrome.
作者信息
Reeve Bryce B, Lucas Nicole, Chen Dandan, McFatrich Molly, Jones Harrison N, Gordon Kelly L, Leiva Leslie Zapata, Lin Li, Coenraads Monica, von Hehn Jana, Carpenter Randall L, Marsh Eric D, Zigler Christina K
机构信息
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.
Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
出版信息
Eur J Paediatr Neurol. 2023 Sep;46:74-81. doi: 10.1016/j.ejpn.2023.07.007. Epub 2023 Jul 28.
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.
目的
本研究的目标是验证用于雷特综合征（RTT）女性患者的观察者报告沟通能力（ORCA）测量方法。
方法
对19名年龄在2岁及以上的RTT患者的照料者进行了定性访谈，包括概念引出和认知访谈方法。随后对279名照料者进行了定量研究，以评估结构效度和信度。
结果
经过微小修改后，修改后的ORCA测量方法易于理解，并涵盖了关键的沟通概念。定量数据显示得分具有可靠性（α = 0.90，重测组内相关系数 = 0.88），地板效应最小且无天花板效应，并且与沟通和象征行为量表有很强的相关性（r = 0.73）。
结论
本研究提供了初步支持，表明修改后的ORCA测量方法是一种可接受的、由照料者报告的RTT女性患者沟通能力测量方法。未来的工作应包括评估该测量方法的纵向效度及其与不同样本中基于临床医生和表现的测量方法之间的关联。
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