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

doi:10.1007/s10803-017-3034-3

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 journal › Article › peer-review

11 Scopus citations

Abstract

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 language	English (US)
Pages (from-to)	1102-1112
Number of pages	11
Journal	Journal of Autism and Developmental Disorders
Volume	47
Issue number	4
DOIs	https://doi.org/10.1007/s10803-017-3034-3
State	Published - Apr 1 2017
Externally published	Yes

Keywords

Caregiver Inventory
Factor analysis
MECP2
Rett syndrome

ASJC Scopus subject areas

Developmental and Educational Psychology

Access to Document

10.1007/s10803-017-3034-3

Cite this

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title = "Assessment of Caregiver Inventory for Rett Syndrome",

abstract = "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{\textquoteright}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{\textquoteright}s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder.",

keywords = "Caregiver Inventory, Factor analysis, MECP2, Rett syndrome",

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

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doi = "10.1007/s10803-017-3034-3",

language = "English (US)",

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AU - Lane, Jane B.

AU - Salter, Amber R.

AU - Jones, Nancy E.

AU - Cutter, Gary

AU - Horrigan, Joseph

AU - Skinner, Steve A.

AU - Kaufmann, Walter E.

AU - Glaze, Daniel G.

AU - Neul, Jeffrey L.

AU - Percy, Alan K.

PY - 2017/4/1

Y1 - 2017/4/1

N2 - 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.

AB - 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.

KW - Caregiver Inventory

KW - Factor analysis

KW - MECP2

KW - Rett syndrome

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IS - 4

ER -

Assessment of Caregiver Inventory for Rett Syndrome

Abstract

Keywords

ASJC Scopus subject areas

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