Assessment of Caregiver Inventory for Rett Syndrome

Jane B. Lane, Amber R. Salter, Nancy E. Jones, Gary Cutter, Joseph Horrigan, Steve A. Skinner, Walter E. Kaufmann, Daniel G. Glaze, Jeffrey L. Neul, Alan K. Percy

Research output: Contribution to journalArticlepeer-review

10 Scopus citations


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.

Original languageEnglish
Pages (from-to)1102-1112
Number of pages11
JournalJournal of autism and developmental disorders
Issue number4
StatePublished - Apr 1 2017


  • Caregiver Inventory
  • Factor analysis
  • MECP2
  • Rett syndrome


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