Psychometric Evaluation of the Caregiver Burden Inventory in Children and Adolescents With PANS. (14th March 2018)

• Record Type: Journal Article
• Authors: Farmer, Cristan; Thienemann, Margo; Leibold, Collin; Kamalani, Gabrielle; Sauls, Bethany; Frankovich, Jennifer
• Is Part Of: Journal of pediatric psychology. Volume 43:Number 7(2018)
• Page Start: 749
• Page End: 757
• Publication Date: 2018-03-14
• Subjects: neuropsychology -- parent stress -- research design and methods; Clinical child psychology -- Periodicals; 618.9289005
• DOI: 10.1093/jpepsy/jsy014
• Languages: English
• ISSNs: 0146-8693

Abstract

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.