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

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.

SUBMITTER: Farmer C

PROVIDER: S-EPMC6054236 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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

Farmer Cristan C Thienemann Margo M Leibold Collin C Kamalani Gabrielle G Sauls Bethany B Frankovich Jennifer J

Journal of pediatric psychology 20180801 7

<h4>Objectives</h4>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.<h4>Methods</h4>Study took place at a c ...[more]

PMID: 29547961

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Project description:BackgroundSeveral studies have assessed the Quality of Life (QoL) in Deaf and hard-of-hearing (DHH) children and adolescents. The findings from these studies, however, vary from DHH children reporting lower QoL than their typically hearing (TH) peers to similar QoL and even higher QoL. These differences have been attributed to contextual and individual factors such as degree of access to communication, the participants' age as well as measurement error. Using written instead of sign language measures has been shown to underestimate mental health symptoms in DHH children and adolescents. It is expected that translating generic QoL measures into sign language will help gain more accurate reports from DHH children and adolescents, thus eliminating one of the sources for the observed differences in research conclusions. Hence, the aim of the current study is to translate the Inventory of Life Quality in Children and Adolescents into Norwegian Sign Language (ILC-NSL) and to evaluate the psychometric properties of the self-report of the ILC-NSL and the written Norwegian version (ILC-NOR) for DHH children and adolescents. The parent report was included for comparison. Associations between child self-report and parent-report are also provided.MethodsFifty-six DHH children completed the ILC-NSL and ILC-NOR in randomized order while their parents completed the parent-report of the ILC-NOR and a questionnaire on hearing- and language-related information. Internal consistency was examined using Dillon-Goldstein's rho and Cronbach's alpha, ILC-NSL and ILC-NOR were compared using intraclass correlation coefficients. Construct validity was examined by partial least squares structural equation modeling (PLS-SEM).ResultsRegarding reliability, the internal consistency was established as acceptable to good, whereas the comparison of the ILC-NSL with the ILC-NOR demonstrated closer correspondence for the adolescent version of the ILC than for the child version. The construct validity, as evaluated by PLS-SEM, resulted in an acceptable fit for the proposed one-factor model for both language versions for adolescents as well as the complete sample.ConclusionThe reliability and validity of the ILC-NSL seem promising, especially for the adolescent version, even though the validation was based on a small sample of DHH children and adolescents.

Project description:BackgroundPost-concussion symptoms (PCS) are a common consequence of pediatric traumatic brain injury (pTBI). They include cognitive, emotional, and physical disturbances. To address the lack of age-adapted instruments assessing PCS after pTBI, this study examines the psychometric properties of the German 17-item post-TBI version of the Postconcussion Symptom Inventory (PCSI-SR8) in children aged 8-12 years. The study also aims to establish reference values based on data from a pediatric general population sample to better estimate the prevalence and clinical relevance of PCS after pTBI in clinical and research settings.MethodsA total of 132 children aged 8-12 years from a post-acute TBI sample and 1,047 from a general population sample were included in the analyses. The questionnaire was translated from English into German and linguistically validated using forward and backward translation and cognitive debriefing to ensure comprehensibility of the developed version. Reliability and validity were examined; descriptive comparisons were made with the results of the English study. Measurement invariance (MI) analyses between TBI and general population samples were conducted prior to establishing reference values. Factors contributing to the total and scale scores of the PCSI-SR8 were identified using regression analyses. Reference values were calculated using percentiles.ResultsMost children (TBI: 83%; general population: 79%) rated at least one symptom as "a little" bothersome. The German PCSI-SR8 met the psychometric assumptions in both samples and was comparable to the English version. The four-factor structure comprising physical, emotional, cognitive, and fatigue symptoms could be replicated. The MI assumption was retained. Therefore, reference values could be provided to determine the symptom burden of patients in relation to a comparable general population. Clinical relevance of reported symptoms is indicated by a score of 8, which is one standard deviation above the mean of the general population sample.ConclusionThe German version of the PCSI-SR8 is suitable for assessment of PCS after pTBI. The reference values allow for a more comprehensive evaluation of PCS following pTBI. Future research should focus on validation of the PCSI-SR8 in more acute phases of TBI, psychometric examination of the pre-post version, and child-proxy comparisons.

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Project description:BackgroundThis paper describes the development and psychometric evaluation of a behavioral assessment instrument primarily intended for use with workgroups in any type of organization. The instrument was developed based on the Nurturing Environments framework which describes four domains important for health, well-being, and productivity; minimizing toxic social interactions, teaching and reinforcing prosocial behaviors, limiting opportunities for problem behaviors, and promoting psychological flexibility. The instrument is freely available to use and adapt under a CC-BY license and intended as a tool that is easy for any group to use and interpret to identify key behaviors to improve their psychosocial work environment.MethodsQuestionnaire data of perceived frequency of behaviors relevant to nurturance were collected from nine different organizations in Sweden. Data were analyzed using confirmatory factor analysis, Rasch analysis, and correlations to investigate relationships with relevant workplace measures.ResultsThe results indicate that the 23-item instrument is usefully divided in two factors, which can be described as risk and protective factors. Toxic social behaviors make up the risk factor, while the protective factor includes prosocial behavior, behaviors that limit problems, and psychological flexibility. Rasch analysis showed that the response categories work as intended for all items, item fit is satisfactory, and there was no significant differential item functioning across age or gender. Targeting indicates that measurement precision is skewed towards lower levels of both factors, while item thresholds are distributed over the range of participant abilities, particularly for the protective factor. A Rasch score table is available for ordinal to interval data transformation.ConclusionsThis initial analysis shows promising results, while more data is needed to investigate group-level measurement properties and validation against concrete longitudinal outcomes. We provide recommendations for how to work in practice with a group based on their assessment data, and how to optimize the measurement precision further. By using a two-dimensional assessment with ratings of both frequency and perceived importance of behaviors the instrument can help facilitate a participatory group development process. The Group Nurturance Inventory is freely available to use and adapt for both commercial and non-commercial use and could help promote transparent assessment practices in organizational and group development.

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

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

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