ArticleJournal of patient-reported outcomes2026
Evaluating different scoring algorithms to assess communication ability for individuals living with Angelman syndrome: the Observer-Reported Communication Ability (ORCA) measure.
Article in Journal of patient-reported outcomes, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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Who cites it
1 citing paper in PubMed.
- Establishing meaningful score differences for the observer-reported communication ability (ORCA) measure using the scale judgment approach with caregivers of individuals with Angelman syndrome.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
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Authors and funding
8 authors.
Funding
Abstract
backgroundMany neurodevelopmental disorders are associated with significantly impaired communication that impacts the individuals and their families' daily activities. The objective of this study is to evaluate the effectiveness of multiple scoring algorithms for the Observer-Reported Communication Ability (ORCA) measure in assessing communication abilities in individuals living with Angelman syndrome and other neurodevelopmental disorders with severe language impairments.
methodsThis secondary data analysis used caregiver-reported data from the ORCA validation study (n = 249) and the Angelman Syndrome Natural History Study (n = 165). Performance of the scoring algorithms was evaluated based on item response theory information functions, the percentage of scores at the floor and ceiling, and the Pearson correlation of scores between the ORCA measure and the Communication and Symbolic Behaviors Scale (CSBS).
resultsThe ORCA measure's scoring algorithms, which include both emerging and mastery levels of communication behaviors ("Emerging & Mastery"), captured lower levels of ability with greater precision than the algorithm that only assesses mastery levels of behaviors. For overall communication ability in the validation study, the Emerging & Mastery algorithm had floor and ceiling effects of 0.4% each, while the Mastery algorithm had effects of 1.2% and 0.0%, respectively. Both ORCA scoring algorithms for overall communication had strong correlations with the CSBS (r = 0.85 and 0.83, respectively). Similar results were found when scoring ability at the expressive, receptive, and pragmatic (social) communication levels.
conclusionsSelection of the appropriate ORCA scoring algorithm for use in research studies should be based on the communication concept of interest for the intervention being evaluated and the characteristics of the neurodevelopmental disorder population being assessed. This study reinforces the need for robust assessment tools that can adapt to the unique challenges of rare disease populations.
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