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

J Autism Dev Disord. 2017 Apr;47(4):1102-1112. doi: 10.1007/s10803-017-3034-3.

Authors

Jane B Lane¹, Amber R Salter², Nancy E Jones³, Gary Cutter², Joseph Horrigan⁴, Steve A Skinner⁵, Walter E Kaufmann^{5

6}, Daniel G Glaze⁷, Jeffrey L Neul⁸, Alan K Percy⁹

Affiliations

¹ Civitan International Research Center, University of Alabama at Birmingham, 1720 2nd Avenue South, CIRC 320E, Birmingham, AL, 35294-0021, USA.
² School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA.
³ Neuren Pharmaceuticals, Camberwell, Australia.
⁴ Department of Psychiatry, University of North Carolina, Chapel Hill, NC, USA.
⁵ Greenwood Genetic Center, Greenwood, SC, USA.
⁶ Department of Neurology, Boston Children's Hospital (Harvard), Boston, MA, USA.
⁷ Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA.
⁸ Department of Neuroscience, University of California San Diego, La Jolla, CA, USA.
⁹ Civitan International Research Center, University of Alabama at Birmingham, 1720 2nd Avenue South, CIRC 320E, Birmingham, AL, 35294-0021, USA. apercy@uab.edu.

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.

Keywords: Caregiver Inventory; Factor analysis; MECP2; Rett syndrome.

MeSH terms

Adaptation, Psychological
Adult
Caregivers / psychology*
Emotions
Female
Follow-Up Studies
Humans
Male
Middle Aged
Reproducibility of Results
Rett Syndrome / psychology*
Rett Syndrome / therapy*
Surveys and Questionnaires / standards*

Grants and funding

U54 HD061222/HD/NICHD NIH HHS/United States