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'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.
authors.affiliation: Civitan International Research Center, University of Alabama at Birmingham, 1720 2nd Avenue South, CIRC 320E, Birmingham, AL, 35294-0021, USA.
authors.forename: Jane B
authors.initials: JB
authors.lastname: Lane
authors.affiliation: School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: Amber R
authors.initials: AR
authors.lastname: Salter
authors.affiliation: Neuren Pharmaceuticals, Camberwell, Australia.
authors.forename: Nancy E
authors.initials: NE
authors.lastname: Jones
authors.affiliation: School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: Gary
authors.initials: G
authors.lastname: Cutter
authors.affiliation: Department of Psychiatry, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: Joseph
authors.initials: J
authors.lastname: Horrigan
authors.affiliation: Greenwood Genetic Center, Greenwood, SC, USA.
authors.forename: Steve A
authors.initials: SA
authors.lastname: Skinner
authors.affiliation: Greenwood Genetic Center, Greenwood, SC, USA.|Department of Neurology, Boston Children's Hospital (Harvard), Boston, MA, USA.
authors.forename: Walter E
authors.initials: WE
authors.lastname: Kaufmann
authors.affiliation: Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA.
authors.forename: Daniel G
authors.initials: DG
authors.lastname: Glaze
authors.affiliation: Department of Neuroscience, University of California San Diego, La Jolla, CA, USA.
authors.forename: Jeffrey L
authors.initials: JL
authors.lastname: Neul
authors.affiliation: Civitan International Research Center, University of Alabama at Birmingham, 1720 2nd Avenue South, CIRC 320E, Birmingham, AL, 35294-0021, USA. apercy@uab.edu.
authors.forename: Alan K
authors.initials: AK
authors.lastname: Percy
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D004644:Emotions; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D015203:Reproducibility of Results; D015518:Rett Syndrome / Q000523:psychology* / Q000628:therapy*; D011795:Surveys and Questionnaires / Q000592:standards*
keywords: Caregiver Inventory; Factor analysis; MECP2; Rett syndrome