Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)

Noelle E. Carlozzi*, Nicholas R. Boileau, Matthew W. Roché, Rebecca E. Ready, Joel S. Perlmutter, Kelvin L. Chou, Stacey K. Barton, Michael K. McCormack, Julie C. Stout, David Cella, Jennifer A. Miner, Jane S. Paulsen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)3419-3439
Number of pages21
JournalQuality of Life Research
Volume29
Issue number12
DOIs
StatePublished - Dec 2020

Keywords

  • Emotion
  • Huntington disease
  • Mental health
  • Neuro-QoL
  • PROMIS
  • Reliability
  • Validity

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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