Journal article
Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)
Quality of life research, Vol.29(12), pp.3419-3439
12/01/2020
DOI: 10.1007/s11136-020-02596-1
PMCID: PMC7686156
PMID: 32813263
Abstract
Background
The majority of persons with Huntington disease (HD) experience mental health symptoms. Patient-reported outcome (PRO) measures are capable of capturing unobservable behaviors and feelings relating to mental health. The current study aimed to test the reliability and responsiveness to self-reported and clinician-rated change over time of Neuro-QoL and PROMIS mental health PROs over the course of a 24-month period.
Methods
At baseline, 12-months, and 24-months, 362 participants with premanifest or manifest HD completed the Neuro-QoL Depression computer adaptive test (CAT), PROMIS Depression short form (SF), Neuro-QoL Anxiety CAT, PROMIS Anxiety SF, PROMIS Anger CAT and SF, Neuro-QoL Emotional/Behavioral Dyscontrol CAT and SF, Neuro-QoL Positive Affect and Well-Being CAT and SF, and Neuro-QoL Stigma CAT and SF. Participants completed several clinician-administered measures at each time point, as well as several global ratings of change at 12- and 24-months. Reliability (test-retest reliability and measurement error) and responsiveness (using standardized response means and general linear models) were assessed.
Results
Test-retest reliability and measurement error were excellent for all PROs (all ICC ≥ .90 for test-retest reliability and all SEM percentages ≤ 6.82%). In addition, 12- and 24-month responsiveness were generally supported for the Neuro-QoL and PROMIS mental health PROs; findings relative to clinician-rated anchors of change (e.g., SRMs for the group with declines ranged from .38 to .91 for 24-month change and .09 to .45, with the majority above .25 for 12-month change) were generally more robust than those relative to self-reported anchors of change (e.g., SRMs for the group with declines ranged from .02 to .75, with the majority above .39 for 24-month change and .09 to .45, with the majority above .16 for 12-month change).
Conclusions
The Neuro-QoL and PROMIS mental health PROs demonstrated strong psychometric reliability, as well as responsiveness to self-reported and clinician-rated change over time in people with HD.
Details
- Title: Subtitle
- Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)
- Creators
- Noelle E. Carlozzi - University of MichiganNicholas R. Boileau - University of MichiganMatthew W. Roché - CHDI FoundationRebecca E. Ready - University of MassachusettsJoel S. Perlmutter - Washington University in St. LouisKelvin L. Chou - Department of Neurology, University of MichiganStacey K. Barton - Washington University in St. LouisMichael K. McCormack - Rutgers, The State University of New JerseyJulie C. Stout - Monash UniversityDavid Cella - Northwestern UniversityJennifer A. Miner - University of MichiganJane S. Paulsen - University of Iowa
- Resource Type
- Journal article
- Publication Details
- Quality of life research, Vol.29(12), pp.3419-3439
- DOI
- 10.1007/s11136-020-02596-1
- PMID
- 32813263
- PMCID
- PMC7686156
- NLM abbreviation
- Qual Life Res
- ISSN
- 0962-9343
- eISSN
- 1573-2649
- Publisher
- Springer International Publishing
- Grant note
- No Award Number / Center for Inherited Disease Research UL1TR000433 / National Center for Advancing Translational Sciences (US) No Award Number / CHDI Foundation (http://dx.doi.org/10.13039/100005725) R01NS077946; R01NS040068 / National Institute of Neurological Disorders and Stroke (http://dx.doi.org/10.13039/100000065)
- Language
- English
- Date published
- 12/01/2020
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383283102771
Metrics
10 Record Views