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

Noelle E. Carlozzi*, Siera Goodnight, Anna L. Kratz, Julie C. Stout, Michael K. Mccormack, Jane S. Paulsen, Nicholas R. Boileau, David Cella, Rebecca E. Ready

*Corresponding author for this work

Research output: Contribution to journalArticle

1 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)467-482
Number of pages16
JournalJournal of Huntington's Disease
Volume8
Issue number4
DOIs
StatePublished - 2019

Keywords

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

ASJC Scopus subject areas

  • Clinical Neurology
  • Cellular and Molecular Neuroscience

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    Carlozzi, N. E., Goodnight, S., Kratz, A. L., Stout, J. C., Mccormack, M. K., Paulsen, J. S., Boileau, N. R., Cella, D., & Ready, R. E. (2019). Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease. Journal of Huntington's Disease, 8(4), 467-482. https://doi.org/10.3233/JHD-190364