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Gepubliceerd in: Quality of Life Research 3/2018

08-12-2017

Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures

Auteurs: Jin-Shei Lai, Siera Goodnight, Nancy R. Downing, Rebecca E. Ready, Jane S. Paulsen, Anna L. Kratz, Julie C. Stout, Michael K. McCormack, David Cella, Christopher Ross, Jenna Russell, Noelle E. Carlozzi

Gepubliceerd in: Quality of Life Research | Uitgave 3/2018

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Abstract

Purpose

Cognitive functioning impacts health-related quality of life (HRQOL) for individuals with Huntington disease (HD). The Neuro-QoL includes two patient-reported outcome (PRO) measures of cognition—Executive Function (EF) and General Concerns (GC). These measures have not previously been validated for use in HD. The purpose of this analysis is to evaluate the reliability and validity of the Neuro-QoL Cognitive Function measures for use in HD.

Methods

Five hundred ten individuals with prodromal or manifest HD completed the Neuro-QoL Cognition measures, two other PRO measures of HRQOL (WHODAS 2.0 and EQ5D), and a depression measure (PROMIS Depression). Measures of functioning The Total Functional Capacity and behavior (Problem Behaviors Assessment) were completed by clinician interview. Objective measures of cognition were obtained using clinician-administered Symbol Digit Modalities Test and the Stroop Test (Word, Color, and Interference). Self-rated, clinician-rated, and objective composite scores were developed. We examined the Neuro-QoL measures for reliability, convergent validity, discriminant validity, and known-groups validity.

Results

Excellent reliabilities (Cronbach’s alphas ≥ 0.94) were found. Convergent validity was supported, with strong relationships between self-reported measures of cognition. Discriminant validity was supported by less robust correlations between self-reported cognition and other constructs. Prodromal participants reported fewer cognitive problems than manifest groups, and early-stage HD participants reported fewer problems than late-stage HD participants.

Conclusions

The Neuro-QoL Cognition measures provide reliable and valid assessments of self-reported cognitive functioning for individuals with HD. Findings support the utility of these measures for assessing self-reported cognition.
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Metagegevens
Titel
Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures
Auteurs
Jin-Shei Lai
Siera Goodnight
Nancy R. Downing
Rebecca E. Ready
Jane S. Paulsen
Anna L. Kratz
Julie C. Stout
Michael K. McCormack
David Cella
Christopher Ross
Jenna Russell
Noelle E. Carlozzi
Publicatiedatum
08-12-2017
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1755-6