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

<b>Background/Objectives</b>: The Rett Syndrome Behavior Questionnaire (RSBQ) is a widely used caregiver-reported instrument for assessing behavioral and neurological features of Rett syndrome (RTT). However, a validated Korean version has not been available. This study aimed to translate the RSBQ into Korean (K-RSBQ) and to evaluate its psychometric properties in a Korean RTT population. <b>Methods</b>: The RSBQ was translated and back-translated using standardized procedures and refined through a Delphi process. Primary caregivers of individuals with clinically diagnosed RTT completed an online survey including the K-RSBQ and the Childhood Autism Rating Scale (CARS). Test-retest reliability was assessed in a subset of caregivers who completed the questionnaire twice within one week, and inter-rater reliability was evaluated when an additional caregiver was available. <b>Results</b>: Sixty-six primary caregivers participated. The K-RSBQ demonstrated high internal consistency for the total score (Cronbach's α = 0.912) and moderate-to-high consistency across most subscales. Test-retest reliability for the total score was moderate (weighted κ = 0.594), while inter-rater reliability between primary and secondary caregivers was generally low. The hand behavior subscale showed low and non-significant test-retest reliability. The K-RSBQ total score exhibited a low-to-moderate correlation with the CARS total score, and the general mood subscale showed a moderate correlation with the CARS emotional response item. Caregivers reported minimal difficulty in understanding the questionnaire items. <b>Conclusions</b>: The K-RSBQ demonstrates acceptable internal consistency and test-retest reliability when administered to primary caregivers, with preliminary evidence supporting its construct validity. Although limitations exist regarding criterion validation and inter-rater agreement, the K-RSBQ represents a feasible and culturally adapted tool for assessing RTT-related behavioral features in Korean clinical and research settings.

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Journal
Children
Published
2026-01-08
DOI
https://doi.org/10.3390/children13010093
Primary Topic
Genetics and Neurodevelopmental Disorders
Type
article
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article

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

Dae-hyun Jang, YUNJU HAN, Seoyon Yang, You Gyoung Yi et al.
Children
Genetics and Neurodevelopmental Disorders
article

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

Dae-hyun Jang, YUNJU HAN, Seoyon Yang, You Gyoung Yi, Ga Hye Kim
article en

Abstract

<b>Background/Objectives</b>: The Rett Syndrome Behavior Questionnaire (RSBQ) is a widely used caregiver-reported instrument for assessing behavioral and neurological features of Rett syndrome (RTT). However, a validated Korean version has not been available. This study aimed to translate the RSBQ into Korean (K-RSBQ) and to evaluate its psychometric properties in a Korean RTT population. <b>Methods</b>: The RSBQ was translated and back-translated using standardized procedures and refined through a Delphi process. Primary caregivers of individuals with clinically diagnosed RTT completed an online survey including the K-RSBQ and the Childhood Autism Rating Scale (CARS). Test-retest reliability was assessed in a subset of caregivers who completed the questionnaire twice within one week, and inter-rater reliability was evaluated when an additional caregiver was available. <b>Results</b>: Sixty-six primary caregivers participated. The K-RSBQ demonstrated high internal consistency for the total score (Cronbach's α = 0.912) and moderate-to-high consistency across most subscales. Test-retest reliability for the total score was moderate (weighted κ = 0.594), while inter-rater reliability between primary and secondary caregivers was generally low. The hand behavior subscale showed low and non-significant test-retest reliability. The K-RSBQ total score exhibited a low-to-moderate correlation with the CARS total score, and the general mood subscale showed a moderate correlation with the CARS emotional response item. Caregivers reported minimal difficulty in understanding the questionnaire items. <b>Conclusions</b>: The K-RSBQ demonstrates acceptable internal consistency and test-retest reliability when administered to primary caregivers, with preliminary evidence supporting its construct validity. Although limitations exist regarding criterion validation and inter-rater agreement, the K-RSBQ represents a feasible and culturally adapted tool for assessing RTT-related behavioral features in Korean clinical and research settings.

ChildrenVol. 13(1)
Ewha Womans University (KR), Chosun University (KR), The Catholic University of Korea Incheon St. Mary's Hospital (KR), Catholic University of Korea (KR)
Quality Education
Openalex Percentile: Top 95%
Genetics and Neurodevelopmental Disorders
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