Citation

Farmer C, Thienemann M, Leibold C, Kamalani G, Sauls B, Frankovich J. J. Pediatr. Psychol. 2018; 43(7): 749-757.

Affiliation

Pediatric Divisions of: Allergy, Immunology, & Rheumatology, Stanford University School of Medicine.

Copyright

(Copyright © 2018, Oxford University Press)

DOI

10.1093/jpepsy/jsy014

PMID

29547961

Abstract

OBJECTIVES: To establish the psychometric properties of the Caregiver Burden Inventory (CBI) in patients with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), which is characterized by the abrupt onset of obsessive-compulsive disorder and/or restricted eating and at least two additional psychiatric symptoms. Parents of patients with PANS have reported high caregiver burden. However, no validated instrument of burden exists for this population.

METHODS: Study took place at a community-based PANS clinic where the CBI is administered as part of routine clinical care. The first CBI available during an active disease flare was analyzed (N =104). Construct validity was evaluated within a confirmatory factor analytic framework. Associations between the CBI and patient/family characteristics were explored, and preliminary normative data for this population are presented.

RESULTS: Item-factor loadings were strong, and the overall fit of the model was good (root mean square error of approximation = .061). Strict/metric measurement invariance was demonstrated across age. The mean Total Score in this sample was 36.72 ± 19.84 (interquartile range 19-53). Total Scores on the CBI were significantly elevated for parents of children who switched schools because of their illness (Cohen's d = 0.75, 95% confidence interval [CI] 0.28-1.22) and for those who had reduced work hours to accommodate the child's illness (Cohen's d = 0.65, 95% CI 0.10-1.20). However, in this relatively high-status sample, socioeconomic variables did not predict Total Scores.

CONCLUSIONS: Parents of patients with PANS experience high caregiver burden. The CBI may be confidently used to assess caregiver burden in this population.

Language: en