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Article Abstract
CDKL5 deficiency disorder is a rare and severe developmental and epileptic encephalopathy that has profound effects on communication. It is essential that communication be measured accurately for upcoming gene therapy trials. The Communication Inventory Disability-Observer Reported (CID-OR) was developed from a framework of communication derived from parent/caregiver interview data (n = 23), in consultation with disability and communication experts, and after reviewing concepts in existing measures. In this study, parents and caregivers (n = 21) took part in 1-hour semistructured think-aloud online interviews. A directed content analysis was conducted using both deductive and inductive coding. Findings suggest that CID-OR was comprehensive, comprehensible, and relevant. Multiple small adjustments were made to improve clarity and representativeness and reduce caregiver burden based on feedback in the data. This content validity study is an important element in the process of developing an effective measure of communication of people with CDKL5 deficiency disorder.
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