Development and Validation of the Korean Version of the Rett Syndrome Behavioral Questionnaire

Area of Science:

• Neuroscience
• Developmental Psychology
• Clinical Psychology

Background:

• Rett syndrome (RTT) is a rare neurodevelopmental disorder.
• Behavioral and neurological assessments are crucial for RTT management.
• A validated Korean version of the Rett Syndrome Behavior Questionnaire (RSBQ) was unavailable.

Purpose of the Study:

• To translate the RSBQ into Korean (K-RSBQ).
• To evaluate the psychometric properties of the K-RSBQ in a Korean RTT population.
• To establish a culturally adapted assessment tool for RTT in Korea.

Main Methods:

• Standardized translation and back-translation of the RSBQ.
• Delphi process for refinement.
• Online survey administered to primary caregivers of individuals with RTT.
• Psychometric evaluation including internal consistency, test-retest reliability, and correlation with the Childhood Autism Rating Scale (CARS).

Main Results:

• The K-RSBQ demonstrated high internal consistency (Cronbach's α = 0.912).
• Moderate test-retest reliability for the total score (weighted κ = 0.594) was observed.
• Preliminary evidence supported construct validity with correlations to CARS, though inter-rater reliability was generally low.

Conclusions:

• The K-RSBQ is a feasible and culturally adapted tool for assessing RTT behavioral features in Korean settings.
• It shows acceptable internal consistency and test-retest reliability for primary caregivers.
• Further validation studies are recommended to address limitations in criterion validation and inter-rater agreement.