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 language | English (US) |
|---|---|
| Pages (from-to) | 36-47 |
| Number of pages | 12 |
| Journal | Neurorehabilitation and Neural Repair |
| Volume | 26 |
| Issue number | 1 |
| DOIs | |
| State | Published - Jan 2012 |
Fingerprint
Keywords
- children
- health-related quality of life
- item bank
- item response theory
- neurological disorders
ASJC Scopus subject areas
- Clinical Neurology
- Rehabilitation
- Neurology
Cite this
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 K; Abresch, R. Ted; Moy, Claudia S.; Cella, David.
In: Neurorehabilitation and Neural Repair, Vol. 26, No. 1, 01.2012, p. 36-47.Research output: Contribution to journal › Article
}
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 K
AU - Abresch, R. Ted
AU - Moy, Claudia S.
AU - Cella, David
PY - 2012/1
Y1 - 2012/1
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.
KW - children
KW - health-related quality of life
KW - item bank
KW - item response theory
KW - neurological disorders
UR - http://www.scopus.com/inward/record.url?scp=84856030030&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84856030030&partnerID=8YFLogxK
U2 - 10.1177/1545968311412054
DO - 10.1177/1545968311412054
M3 - Article
C2 - 21788436
AN - SCOPUS:84856030030
VL - 26
SP - 36
EP - 47
JO - Neurorehabilitation and Neural Repair
JF - Neurorehabilitation and Neural Repair
SN - 1545-9683
IS - 1
ER -