Assessment of Caregiver Inventory for Rett Syndrome.

Journal Article (Journal Article)

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.

Full Text

Duke Authors

Cited Authors

  • Lane, JB; Salter, AR; Jones, NE; Cutter, G; Horrigan, J; Skinner, SA; Kaufmann, WE; Glaze, DG; Neul, JL; Percy, AK

Published Date

  • April 2017

Published In

Volume / Issue

  • 47 / 4

Start / End Page

  • 1102 - 1112

PubMed ID

  • 28132121

Pubmed Central ID

  • PMC5357458

Electronic International Standard Serial Number (EISSN)

  • 1573-3432

Digital Object Identifier (DOI)

  • 10.1007/s10803-017-3034-3


  • eng

Conference Location

  • United States