Quality-of-life measures in children with neurological conditions: Pediatric neuro-QOL

Jin Shei Lai*, Cindy Nowinski, David Victorson, Rita Bode, Tracy Podrabsky, Natalie McKinney, Don Straube, Gregory L. Holmes, Craig M. McDonald, Erik Henricson, R. Ted Abresch, Claudia S. Moy, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticle

34 Citations (Scopus)

Abstract

Background. A comprehensive, reliable, and valid measurement system is needed to monitor changes in children with neurological conditions who experience lifelong functional limitations. Objective. This article describes the development and psychometric properties of the pediatric version of the Quality of Life in Neurological Disorders (Neuro-QOL) measurement system. Methods. The pediatric Neuro-QOL consists of generic and targeted measures. Literature review, focus groups, individual interviews, cognitive interviews of children and consensus meetings were used to identify and finalize relevant domains and item content. Testing was conducted on 1018 children aged 10 to 17 years drawn from the US general population for generic measures and 171 similarly aged children with muscular dystrophy or epilepsy for targeted measures. Dimensionality was evaluated using factor analytic methods. For unidimensional domains, item parameters were estimated using item response theory models. Measures with acceptable fit indices were calibrated as item banks; those without acceptable fit indices were treated as summary scales. Results. Ten measures were developed: 8 generic or targeted banks (anxiety, depression, anger, interaction with peers, fatigue, pain, applied cognition, and stigma) and 2 generic scales (upper and lower extremity function). The banks reliably (r > 0.90) measured 63.2% to 100% of the children tested. Conclusions. The pediatric Neuro-QOL is a comprehensive measurement system with acceptable psychometric properties that could be used in computerized adaptive testing. The next step is to validate these measures in various clinical populations.

Original languageEnglish (US)
Pages (from-to)36-47
Number of pages12
JournalNeurorehabilitation and Neural Repair
Volume26
Issue number1
DOIs
StatePublished - Jan 1 2012

Fingerprint

Quality of Life
Pediatrics
Psychometrics
Interviews
Muscular Dystrophies
Anger
Nervous System Diseases
Focus Groups
Cognition
Population
Fatigue
Lower Extremity
Epilepsy
Consensus
Anxiety
Depression
Pain

Keywords

  • children
  • health-related quality of life
  • item bank
  • item response theory
  • neurological disorders

ASJC Scopus subject areas

  • Rehabilitation
  • Neurology
  • Clinical Neurology

Cite this

Lai, Jin Shei ; Nowinski, Cindy ; Victorson, David ; Bode, Rita ; Podrabsky, Tracy ; McKinney, Natalie ; Straube, Don ; Holmes, Gregory L. ; McDonald, Craig M. ; Henricson, Erik ; Abresch, R. Ted ; Moy, Claudia S. ; Cella, David. / Quality-of-life measures in children with neurological conditions : Pediatric neuro-QOL. In: Neurorehabilitation and Neural Repair. 2012 ; Vol. 26, No. 1. pp. 36-47.
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abstract = "Background. A comprehensive, reliable, and valid measurement system is needed to monitor changes in children with neurological conditions who experience lifelong functional limitations. Objective. This article describes the development and psychometric properties of the pediatric version of the Quality of Life in Neurological Disorders (Neuro-QOL) measurement system. Methods. The pediatric Neuro-QOL consists of generic and targeted measures. Literature review, focus groups, individual interviews, cognitive interviews of children and consensus meetings were used to identify and finalize relevant domains and item content. Testing was conducted on 1018 children aged 10 to 17 years drawn from the US general population for generic measures and 171 similarly aged children with muscular dystrophy or epilepsy for targeted measures. Dimensionality was evaluated using factor analytic methods. For unidimensional domains, item parameters were estimated using item response theory models. Measures with acceptable fit indices were calibrated as item banks; those without acceptable fit indices were treated as summary scales. Results. Ten measures were developed: 8 generic or targeted banks (anxiety, depression, anger, interaction with peers, fatigue, pain, applied cognition, and stigma) and 2 generic scales (upper and lower extremity function). The banks reliably (r > 0.90) measured 63.2{\%} to 100{\%} of the children tested. Conclusions. The pediatric Neuro-QOL is a comprehensive measurement system with acceptable psychometric properties that could be used in computerized adaptive testing. The next step is to validate these measures in various clinical populations.",
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Lai, JS, Nowinski, C, Victorson, D, Bode, R, Podrabsky, T, McKinney, N, Straube, D, Holmes, GL, McDonald, CM, Henricson, E, Abresch, RT, Moy, CS & Cella, D 2012, 'Quality-of-life measures in children with neurological conditions: Pediatric neuro-QOL', Neurorehabilitation and Neural Repair, vol. 26, no. 1, pp. 36-47. https://doi.org/10.1177/1545968311412054

Quality-of-life measures in children with neurological conditions : Pediatric neuro-QOL. / Lai, Jin Shei; Nowinski, Cindy; Victorson, David; Bode, Rita; Podrabsky, Tracy; McKinney, Natalie; Straube, Don; Holmes, Gregory L.; McDonald, Craig M.; Henricson, Erik; Abresch, R. Ted; Moy, Claudia S.; Cella, David.

In: Neurorehabilitation and Neural Repair, Vol. 26, No. 1, 01.01.2012, p. 36-47.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Quality-of-life measures in children with neurological conditions

T2 - Pediatric neuro-QOL

AU - Lai, Jin Shei

AU - Nowinski, Cindy

AU - Victorson, David

AU - Bode, Rita

AU - Podrabsky, Tracy

AU - McKinney, Natalie

AU - Straube, Don

AU - Holmes, Gregory L.

AU - McDonald, Craig M.

AU - Henricson, Erik

AU - Abresch, R. Ted

AU - Moy, Claudia S.

AU - Cella, David

PY - 2012/1/1

Y1 - 2012/1/1

N2 - Background. A comprehensive, reliable, and valid measurement system is needed to monitor changes in children with neurological conditions who experience lifelong functional limitations. Objective. This article describes the development and psychometric properties of the pediatric version of the Quality of Life in Neurological Disorders (Neuro-QOL) measurement system. Methods. The pediatric Neuro-QOL consists of generic and targeted measures. Literature review, focus groups, individual interviews, cognitive interviews of children and consensus meetings were used to identify and finalize relevant domains and item content. Testing was conducted on 1018 children aged 10 to 17 years drawn from the US general population for generic measures and 171 similarly aged children with muscular dystrophy or epilepsy for targeted measures. Dimensionality was evaluated using factor analytic methods. For unidimensional domains, item parameters were estimated using item response theory models. Measures with acceptable fit indices were calibrated as item banks; those without acceptable fit indices were treated as summary scales. Results. Ten measures were developed: 8 generic or targeted banks (anxiety, depression, anger, interaction with peers, fatigue, pain, applied cognition, and stigma) and 2 generic scales (upper and lower extremity function). The banks reliably (r > 0.90) measured 63.2% to 100% of the children tested. Conclusions. The pediatric Neuro-QOL is a comprehensive measurement system with acceptable psychometric properties that could be used in computerized adaptive testing. The next step is to validate these measures in various clinical populations.

AB - Background. A comprehensive, reliable, and valid measurement system is needed to monitor changes in children with neurological conditions who experience lifelong functional limitations. Objective. This article describes the development and psychometric properties of the pediatric version of the Quality of Life in Neurological Disorders (Neuro-QOL) measurement system. Methods. The pediatric Neuro-QOL consists of generic and targeted measures. Literature review, focus groups, individual interviews, cognitive interviews of children and consensus meetings were used to identify and finalize relevant domains and item content. Testing was conducted on 1018 children aged 10 to 17 years drawn from the US general population for generic measures and 171 similarly aged children with muscular dystrophy or epilepsy for targeted measures. Dimensionality was evaluated using factor analytic methods. For unidimensional domains, item parameters were estimated using item response theory models. Measures with acceptable fit indices were calibrated as item banks; those without acceptable fit indices were treated as summary scales. Results. Ten measures were developed: 8 generic or targeted banks (anxiety, depression, anger, interaction with peers, fatigue, pain, applied cognition, and stigma) and 2 generic scales (upper and lower extremity function). The banks reliably (r > 0.90) measured 63.2% to 100% of the children tested. Conclusions. The pediatric Neuro-QOL is a comprehensive measurement system with acceptable psychometric properties that could be used in computerized adaptive testing. The next step is to validate these measures in various clinical populations.

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