Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD)
- 18 December 2019
- journal article
- research article
- Published by Springer Science and Business Media LLC in Quality of Life Research
- Vol. 29 (5), 1393-1403
- https://doi.org/10.1007/s11136-019-02391-7
Abstract
Purpose Individuals with Huntington disease (HD) experience progressive cognitive decline that may appear years before motor manifestations of the disease. These declines have a profound effect on health-related quality of life (HRQOL) over the disease course, and thus it is important that self-report measures of cognitive function are validated for use in longitudinal studies. Methods 359 individuals with premanifest or manifest HD completed baseline and at least one follow-up (12- and 24-month) assessment. Neuro-QoL™ Cognitive Function was administered at each time-point. Participants completed a self-reported global rating of cognitive change, as well as performance-based cognitive changes (using the Symbol Digit Modalities Test). Standardized response means (SRMs) and general linear models evaluated whether Neuro-QoL™ Cognitive Function was responsive to change over time with respect to self-reported and performance-based anchors. Test–retest reliability and known-group validity were also examined. Results Responsiveness was supported by effect sizes that were small in magnitude, but in the expected direction relative to self-reported and performance-based change. General linear models generally supported 12- and 24-month responsiveness relative to self-reported cognitive change and 12-month responsiveness relative to performance-based change. Test–retest reliability was excellent, and the measure exhibited known-group validity. Conclusion Longitudinal analyses generally indicate that the Neuro-QoL™ Cognitive Function measure is sensitive to change over time in individuals with HD. Neuro-QoL Cognitive Function changes reflect self-reported cognitive change at 12 and 24 months and performance-based change at 12 months. This measure may be useful in clinical trials or longitudinal observation studies.Keywords
Funding Information
- National Institute of Neurological Disorders and Stroke (R01NS077946)
- National Center for Advancing Translational Sciences (UL1TR000433)
- National Institute of Neurological Disorders and Stroke (R01NS040068)
- NIH, Center for Inherited Disease Research
- CHDI Foundation
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