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J Huntingtons Dis. 2019;8(4):467-482. doi: 10.3233/JHD-190364.

Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease.

Author information

1
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
2
Institute of Cognitive and Clinical Neurosciences, School of Psychological Sciences, Monash University, Clayton, Victoria, Australia.
3
Department of Psychiatry, Rutgers-Robert Wood Johnson Medical School, Piscataway, NJ, USA.
4
Department of Pathology, Rowan-School of Medicine, Stratford, NJ, USA.
5
Departments of Psychiatry, Neurology, and Psychology, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA.
6
Departments of Medical Social Sciences and Preventative Medicine, Northwestern University, Chicago, IL, USA.
7
Department of Psychological and Brain Sciences, University of Massachusetts, Amherst, MA, USA.

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.

KEYWORDS:

Huntington disease ; Neuro-QoL; PROMIS; emotion; mental health; reliability; validity

PMID:
31424415
DOI:
10.3233/JHD-190364

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