Journal article
Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease
Journal of Huntington's disease, Vol.8(4), pp.467-482
01/01/2019
DOI: 10.3233/JHD-190364
PMCID: PMC7684996
PMID: 31424415
Abstract
Background: Patient-reported outcomes (PROs) for mental health are important for persons with Huntington disease (HD) who commonly experience symptoms of depression, anxiety, irritability, anger, aggression, and apathy. Given this, there is a need for reliable and valid patient-reported outcomes measures of mental health for use as patient-centered outcomes in clinical trials.
Objective: Thus, the purpose of this study was to establish the psychometric properties (i.e., reliability and validity) of six Neuro-QoL and PROMIS mental health measures to support their clinical utility in persons with HD.
Methods: 294 individuals with premanifest (n = 102) or manifest HD (n = 131 early HD; n = 61 late HD) completed Neuro-QoL/PROMIS measures of Emotional and Behavioral Dyscontrol, Positive Affect and Well-Being, Stigma, Anger, Anxiety, and Depression, legacy measures of self-reported mental health, and clinician-rated assessments of functioning.
Results: Convergent validity and discriminant validity for the Neuro-QoL and PROMIS measures of Emotional and Behavioral Dyscontrol, Positive Affect and Well-Being, Stigma, Anger, Anxiety, and Depression, were supported in persons with HD. Neuro-QoL measures of Anxiety and Depression also demonstrated moderate sensitivity and specificity (i.e., they were able to distinguish between individuals with and without clinically significant anxiety and depression).
Conclusions: Findings provide psychometric support for the clinical utility of the Neuro-QoL/PROMIS measures of mental health measures in persons with HD. As such, these measures should be considered for the standardized assessment of health-related quality of life in persons with HD.
Details
- Title: Subtitle
- Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease
- Creators
- Noelle E. Carlozzi - University of MichiganSiera Goodnight - University of MichiganAnna L. Kratz - University of MichiganJulie C. Stout - Monash UniversityMichael K. McCormack - Rutgers, The State University of New JerseyJane S. Paulsen - University of IowaNicholas R. Boileau - University of MichiganDavid Cella - Northwestern UniversityRebecca E. Ready - University of Massachusetts Amherst
- Resource Type
- Journal article
- Publication Details
- Journal of Huntington's disease, Vol.8(4), pp.467-482
- DOI
- 10.3233/JHD-190364
- PMID
- 31424415
- PMCID
- PMC7684996
- NLM abbreviation
- J Huntingtons Dis
- ISSN
- 1879-6397
- eISSN
- 1879-6400
- Publisher
- Ios Press
- Number of pages
- 16
- Grant note
- R01NS040068 / NIH, National Institute of Neurological Disorders and Stroke; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Neurological Disorders & Stroke (NINDS) R01NS077946 / NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Neurological Disorders & Stroke (NINDS) R01NS077946 / National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Neurological Disorders & Stroke (NINDS) CHDI Foundation UL1TR000433 / National Center for Advancing Translational Sciences; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Center for Advancing Translational Sciences (NCATS)
- Language
- English
- Date published
- 01/01/2019
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383909602771
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