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- Title
Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD).
- Authors
Carlozzi, Noelle E.; Boileau, Nicholas R.; Paulsen, Jane S.; Downing, Nancy R.; Ready, Rebecca; Perlmutter, Joel S.; Cella, David; Chou, Kelvin L.; McCormack, Michael K.; Barton, Stacey; Lai, Jin-Shei
- Abstract
<bold>Purpose: </bold>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.<bold>Methods: </bold>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.<bold>Results: </bold>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.<bold>Conclusion: </bold>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.
- Subjects
HUNTINGTON disease; COGNITIVE ability; STATISTICAL reliability; QUALITY of life; LONGITUDINAL method; VARIABILITY (Psychometrics)
- Publication
Quality of Life Research, 2020, Vol 29, Issue 5, p1393
- ISSN
0962-9343
- Publication type
journal article
- DOI
10.1007/s11136-019-02391-7