Content Validation of the Communication Inventory Disability-Observer Reported (CID-OR)

Area of Science:

• Neuroscience
• Genetics
• Developmental Biology

Background:

• CDKL5 deficiency disorder (CDD) is a severe neurodevelopmental condition impacting communication.
• Accurate communication assessment is critical for evaluating interventions like gene therapy in CDD.
• Existing measures may not fully capture the communication needs of individuals with CDD.

Purpose of the Study:

• To establish the content validity of the Communication Inventory Disability-Observer Reported (CID-OR) for CDD.
• To refine the CID-OR based on caregiver feedback for improved clarity and usability.
• To ensure the CID-OR accurately reflects communication challenges in CDD.

Main Methods:

• Development of CID-OR based on expert consultation and parent interviews.
• Semi-structured, think-aloud online interviews with parents/caregivers (n=21).
• Directed content analysis using deductive and inductive coding.

Main Results:

• The CID-OR was found to be comprehensive, comprehensible, and relevant by caregivers.
• Content analysis led to minor adjustments for clarity, representativeness, and reduced caregiver burden.
• The study confirmed the CID-OR's suitability as a communication measure for CDD.

Conclusions:

• The CID-OR demonstrates strong content validity for assessing communication in CDD.
• Caregiver feedback was instrumental in refining the tool for practical application.
• The validated CID-OR is a valuable instrument for future research and clinical trials in CDD.