Evidence map›Paper›PMID 31853881›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2020

Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD).

Noelle E Carlozzi, Nicholas R Boileau, Jane S Paulsen, Nancy R Downing, Rebecca Ready, Joel S Perlmutter, David Cella, Kelvin L Chou, Michael K McCormack, Stacey Barton and 1 more

Abstract read
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Observational
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Noelle E CarlozziDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA. carlozzi@med.umich.edu.ORCID http://orcid.org/0000-0003-0439-9429
Nicholas R BoileauDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
Jane S PaulsenDepartments of Psychiatry, Neurology, and Psychological and Brain Sciences, The University of Iowa, Iowa City, IA, USA.
Nancy R DowningCollege of Nursing, Texas A&M, Bryan, TX, USA.
Rebecca ReadyDepartment of Psychological and Brain Sciences, University of Massachusetts, Amherst, MA, USA.
Joel S PerlmutterDepartment of Neurology, Washington University in St. Louis, St. Louis, MO, USA.
David CellaDepartment of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Kelvin L ChouDepartment of Neurology, University of Michigan, Ann Arbor, MI, USA.
Michael K McCormackDepartment of Pathology, Rowan-School of Medicine, Stratford, NJ, USA.
Stacey BartonDepartment of Neurology, Washington University in St. Louis, St. Louis, MO, USA.
Jin-Shei LaiDepartment of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

Funding

Michigan Institute for Clinical and Health Research (MCHR)UL1TR000433 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI MASHOUR, GEORGE ALEXANDER · 2012 to 2016
$49.9M
NEUROBIOLOGICAL PREDICTORS OF HUNTINGTON'S DISEASER01NS040068 · NINDS · UNIVERSITY OF IOWA · PI PAULSEN, JANE S · 2001 to 2013
$48.5M
Validation of the HD-HRQOL (Huntington disease quality of life measure)R01NS077946 · NINDS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI CARLOZZI, NOELLE E. · 2012 to 2016
$3.2M
Preparing for preventive clinical trials in Huntington's diseaseU01NS105509 · NINDS · UNIVERSITY OF WISCONSIN-MADISON · PI PAULSEN, JANE S · 2020 to 2025
$2.5M
Statistical disease modeling and clinimetrics to prepare for preventive trials in huntington diseaseU01NS103475 · NINDS · UNIVERSITY OF WISCONSIN-MADISON · PI PAULSEN, JANE S · 2020 to 2022
$1.7M
NCATS NIH HHS UL1 TR000433NCATS NIH HHS UL1TR000433NINDS NIH HHS R01 NS040068NINDS NIH HHS R01NS040068NINDS NIH HHS R01 NS077946NINDS NIH HHS R01NS077946NINDS NIH HHS U01 NS103475NINDS NIH HHS U01 NS105509
6 · The paper itself

Abstract

purposeIndividuals 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.

methods359 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.

resultsResponsiveness 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.

conclusionLongitudinal 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.

Indexed as

Neuropsychological TestsAdultCognitionCognitive DysfunctionDisease ProgressionFemaleHumansHuntington DiseaseLongitudinal StudiesMaleMiddle AgedOutcome Assessment, Health CarePsychometricsQuality of LifeReproducibility of ResultsSelf ReportCognitionHDQLIFEHuntington diseaseLongitudinal studiesOutcome assessment (health care)Quality of life

Identifiers

PMID31853881
PMCPMC7195233

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.