| Autor: |
Lane JB; Civitan International Research Center, University of Alabama at Birmingham, 1720 2nd Avenue South, CIRC 320E, Birmingham, AL, 35294-0021, USA., Salter AR; School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA., Jones NE; Neuren Pharmaceuticals, Camberwell, Australia., Cutter G; School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA., Horrigan J; Department of Psychiatry, University of North Carolina, Chapel Hill, NC, USA., Skinner SA; Greenwood Genetic Center, Greenwood, SC, USA., Kaufmann WE; Greenwood Genetic Center, Greenwood, SC, USA.; Department of Neurology, Boston Children's Hospital (Harvard), Boston, MA, USA., Glaze DG; Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA., Neul JL; Department of Neuroscience, University of California San Diego, La Jolla, CA, USA., Percy AK; Civitan International Research Center, University of Alabama at Birmingham, 1720 2nd Avenue South, CIRC 320E, Birmingham, AL, 35294-0021, USA. apercy@uab.edu. |
| Abstrakt: |
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. |
