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J Pediatr Psychol. 2018 Aug 1;43(7):749-757. doi: 10.1093/jpepsy/jsy014.

Psychometric Evaluation of the Caregiver Burden Inventory in Children and Adolescents With PANS.

Author information

1
Intramural Research Program, National Institute of Mental Health.
2
Stanford PANS Clinic and Research Program at Lucile Packard Children's Hospital, Stanford University School of Medicine.
3
Child & Adolescent Psychiatry, Stanford University School of Medicine.
4
Pediatric Divisions of: Allergy, Immunology, & Rheumatology, Stanford University School of Medicine.
5
Tufts University School of Medicine.

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.

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