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

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

doi:10.1007/s11136-017-1755-6

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

Journal article

Peer reviewed

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

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, …

Quality of life research, Vol.27(3), pp.811-822

03/2018

DOI: 10.1007/s11136-017-1755-6

PMCID: PMC5845825

PMID: 29222609

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https://www.ncbi.nlm.nih.gov/pmc/articles/5845825View

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Abstract

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. 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. 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. 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.

Adult

Female

Humans

Huntington Disease - psychology

Male

Middle Aged

Patient Reported Outcome Measures

Quality of Life - psychology

Reproducibility of Results

Details

Title: Subtitle: Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures
Creators: Jin-Shei Lai - Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair, 19th Floor, Chicago, IL, 60611, USA. js-lai@northwestern.edu
Siera Goodnight - Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA
Nancy R Downing - College of Nursing, Texas A&M, Bryan, TX, USA
Rebecca E Ready - Department of Psychological and Brain Sciences, University of Massachusetts, Amherst, MA, USA
Jane S Paulsen - University of Iowa, Psychological and Brain Sciences
Anna L Kratz - University of Michigan
Julie C Stout - Monash University
Michael K McCormack - Department of Pathology, Rowan University, Piscataway, NJ, USA
David Cella - Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair, 19th Floor, Chicago, IL, 60611, USA
Christopher Ross - Departments of Psychiatry, Neurology, Pharmacology and Neuroscience, Johns Hopkins University, Baltimore, MD, USA
Jenna Russell - University of Michigan
Noelle E Carlozzi - Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA
Resource Type: Journal article
Publication Details: Quality of life research, Vol.27(3), pp.811-822
DOI: 10.1007/s11136-017-1755-6
PMID: 29222609
PMCID: PMC5845825
NLM abbreviation: Qual Life Res
ISSN: 0962-9343
eISSN: 1573-2649
Grant note: 1K01AR064275 / NIAMS NIH HHS R01 NS040068 / NINDS NIH HHS R01NS077946 / NINDS NIH HHS UL1TR000433 / National Center for Advancing Translational Sciences (US) K01 AR064275 / NIAMS NIH HHS R01 NS103475 / NINDS NIH HHS R01NS040068 / NINDS NIH HHS R01 NS077946 / NINDS NIH HHS UL1 TR002240 / NCATS NIH HHS UL1 TR000433 / NCATS NIH HHS R01 NS105509 / NINDS NIH HHS
Language: English
Date published: 03/2018
Academic Unit: Psychiatry; Psychological and Brain Sciences
Record Identifier: 9984208754502771

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