Evidence map›Paper›PMID 32839864›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2021

Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks.

Noelle E Carlozzi, Nicholas R Boileau, Angela Roberts, Praveen Dayalu, Dana L Hanifan, Jennifer A Miner, Daniel Claassen, Emily Mower Provost

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Speech and swallowing rehabilitation in Huntington's disease: clinical outcomes and correlations with disease severity.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026
    Observational
  2. Article
  3. Article
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

8 authors.

Noelle E CarlozziDepartment of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 48109-2800, USA. carlozzi@med.umich.edu.ORCID http://orcid.org/0000-0003-0439-9429
Nicholas R BoileauDepartment of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 48109-2800, USA.
Angela RobertsDepartment of Communication Sciences and Disorders, Northwestern University, Evanston, IL, USA.
Praveen DayaluDepartment of Neurology, University of Michigan, Ann Arbor, MI, USA.
Dana L HanifanDepartment of Speech-Language Pathology, University of Michigan, Ann Arbor, MI, USA.
Jennifer A MinerDepartment of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 48109-2800, USA.
Daniel ClaassenDepartment of Neurology, Vanderbilt University, Nashville, TN, USA.
Emily Mower ProvostDepartment of Computer Science and Engineering, University of Michigan, Ann Arbor, MI, USA.

Funding

Michigan Institute for Clinical and Health Research (MICHR)UL1TR002240 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI LUMENG, JULIE C, MASHOUR, GEORGE ALEXANDER · 2017 to 2022
$54.9M
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
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
CHDI Foundation Enroll HDNational Science Foundation CAREER-1651740NCATS NIH HHS UL1 TR000433NCATS NIH HHS UL1 TR002240NIH HHS UL1TR000433NINDS NIH HHS R01BS077946NINDS NIH HHS R01 NS077946
6 · The paper itself

Abstract

purposeAs Huntington disease (HD) progresses, speech and swallowing difficulties become more profound. These difficulties have an adverse effect on health-related quality of life (HRQOL), thus psychometrically robust measures of speech and swallowing are needed to better understand the impact of these domains across the course of the disease. Therefore, the purpose of this study is to establish the clinical utility of two new patient-reported outcome measures (PROs), HDQLIFE Speech Difficulties and HDQLIFE Swallowing Difficulties.

methodsThirty-one participants with premanifest or manifest HD, and 31 age- and sex-matched healthy control participants were recruited for this study. Participants completed several PROs [HDQLIFE Speech Difficulties, HDQLIFE Swallowing Difficulties, Communication Participation Item Bank (CPIB)], as well as several clinician-rated assessments of speech and functioning. A computational algorithm designed to detect features of spoken discourse was also examined. Analyses were focused on establishing the reliability and validity of these new measures.

resultsInternal consistency was good for Swallowing (Cronbach's alpha = 0.89) and excellent for Speech and the CPIB (both Cronbach's alpha ≥ 0.94), and convergent/discriminant validity was supported. Known groups validity for the PROs was supported by significant group differences among control participants and persons with different stages of HD (all p < 0.0001). All PROs were able to distinguish those with and without clinician-rated dysarthria (likelihood ratios far exceeded the threshold for clinical decision making [all ≥ 3.28]).

conclusionsFindings support the clinical utility of the HDQLIFE Speech and Swallowing PROs and the CPIB for use across the HD disease spectrum. These PROs also have the potential to be clinically useful in other populations.

Indexed as

AdultCase-Control StudiesDeglutition DisordersFemaleHumansHuntington DiseaseMaleMiddle AgedPatient Reported Outcome MeasuresPsychometricsQuality of LifeReproducibility of ResultsSpeech DisordersHealth-related quality of lifeHuntington diseasePatient-reported outcome measuresSpeech difficultiesSwallowing difficulties

Identifiers

PMID32839864
PMCPMC7854808

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Registered trials

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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.