Journal article
Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD)
Quality of life research, Vol.29(5), pp.1393-1403
05/01/2020
DOI: 10.1007/s11136-019-02391-7
PMCID: PMC7195233
PMID: 31853881
Abstract
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.
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.
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.
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.
Details
- Title: Subtitle
- Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD)
- Creators
- Noelle E Carlozzi - University of MichiganNicholas R Boileau - University of MichiganJane S Paulsen - University of IowaNancy R Downing - Bryan CollegeRebecca Ready - University of Massachusetts AmherstJoel S Perlmutter - Washington University in St. LouisDavid Cella - Northwestern UniversityKelvin L Chou - University of MichiganMichael K McCormack - Rowan UniversityStacey Barton - Washington University in St. LouisJin-Shei Lai - Northwestern University
- Resource Type
- Journal article
- Publication Details
- Quality of life research, Vol.29(5), pp.1393-1403
- DOI
- 10.1007/s11136-019-02391-7
- PMID
- 31853881
- PMCID
- PMC7195233
- NLM abbreviation
- Qual Life Res
- ISSN
- 0962-9343
- eISSN
- 1573-2649
- Grant note
- R01 NS040068 / NINDS NIH HHS R01NS077946 / NINDS NIH HHS U01 NS103475 / NINDS NIH HHS UL1TR000433 / NCATS NIH HHS U01 NS105509 / NINDS NIH HHS R01 NS077946 / NINDS NIH HHS R01NS040068 / NINDS NIH HHS UL1 TR000433 / NCATS NIH HHS
- Language
- English
- Date published
- 05/01/2020
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383916702771
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