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The online version of this article (doi:10.1007/s10803-017-3034-3) contains supplementary material, which is available to authorized users.
Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder.
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- Assessment of Caregiver Inventory for Rett Syndrome
Jane B. Lane
Amber R. Salter
Nancy E. Jones
Steve A. Skinner
Walter E. Kaufmann
Daniel G. Glaze
Jeffrey L. Neul
Alan K. Percy
- Springer US