Evidence map›Paper›PMID 28968239›Full record

ArticleJournal of Huntington's disease2017

Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington's Disease.

Nicholas R Boileau, Julie C Stout, Janes S Paulsen, David Cella, Michael K McCormack, Martha A Nance, Samuel Frank, Jin-Shei Lai, Noelle E Carlozzi

Abstract readMulticenter Study
In one paragraph

Article in Journal of Huntington's disease, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–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

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Exercise in Huntington's Disease: Current State and Clinical Significance.Tremor and other hyperkinetic movements (New York, N.Y.) · 2019
    Review
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

9 authors.

Nicholas R BoileauDepartment of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
Julie C StoutSchool of Psychological Sciences, Monash University, Clayton, Victoria, Australia.
Janes S PaulsenDepartment of Psychiatry, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA.
David CellaDepartment of Medical Social Sciences, Northwestern University, Chicago, IL, USA.
Michael K McCormackDepartment of Pathology, Rowan University - SOM, Stratford, NJ, USA.
Martha A NanceStruthers Parkinson's Center, Golden Valley, MN, USA.
Samuel FrankBeth Israel Deaconess Medical Center, Boston, MA, USA.
Jin-Shei LaiDepartment of Medical Social Sciences, Northwestern University, Chicago, IL, USA.
Noelle E CarlozziDepartment of Physical Medicine and Rehabilitation, 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
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
NCATS NIH HHS UL1 TR000433NCATS NIH HHS UL1 TR002240NINDS NIH HHS R01 NS040068NINDS NIH HHS R01 NS077946
6 · The paper itself

Abstract

backgroundHuntington's disease (HD), is a neurodegenerative disorder that is associated with cognitive, behavioral, and motor impairments that diminish health related quality of life (HRQOL). The HD-PRO-TRIADTM is a quality of life measure that assesses health concerns specific to individuals with HD. Preliminary psychometric characterization was limited to a convenience sample of HD participants who completed measures at home so clinician-ratings were unavailable.

objectivesThe current study evaluates the reliability and validity of the HD-PRO-TRIADTM in a well-characterized sample of individuals with HD.

methodsFour-hundred and eighty-two individuals with HD (n = 192 prodromal, n = 193 early, and n = 97 late) completed the HD-PRO-TRIADTM questionnaire. Clinician-rated assessments from the Unified Huntington Disease Rating Scales, the short Problem Behaviors Assessment, and three generic measures of HRQOL (WHODAS 2.0, RAND-12, and EQ-5D) were also examined.

resultsInternal reliability for all domains and the total HD-PRO-TRIADTM was excellent (all Cronbach's α >0.93). Convergent and discriminant validity were supported by significant associations between the HD-PRO-TRIADTM domains, and other patient reported outcome measures as well as clinician-rated measures. Known groups validity was supported as the HD-PRO-TRIADTM differentiated between stages of the disease. Floor and ceiling effects were generally within acceptable limits. There were small effect sizes for 12-month change over time and moderate effect sizes for 24-month change over time.

conclusionsFindings support excellent internal reliability, convergent and discriminant validity, known groups validity, and responsiveness to change over time. The current study supports the clinical efficacy of the HD-PRO-TRIADTM. Future research is needed to assess the test-retest reliability of this measure.

Indexed as

AdultAgedFemaleFollow-Up StudiesHumansHuntington DiseaseMaleMiddle AgedOutcome Assessment, Health CarePatient Reported Outcome MeasuresPsychometricsQuality of LifeReproducibility of ResultsSeverity of Illness IndexSurveys and QuestionnairesTime FactorsHD-PRO-TRIADTMhealth-related quality of lifeHuntington’s diseasepatient reported outcome (PRO)psychometricreliabilityvalidity

Identifiers

PMID28968239
PMCPMC6089522

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.