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

doi:10.1007/s11136-020-02596-1

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

Qual Life Res. 2020 Dec;29(12):3419-3439. doi: 10.1007/s11136-020-02596-1. Epub 2020 Aug 19.

Authors

Noelle E Carlozzi^{1

2}, Nicholas R Boileau³, Matthew W Roché^{4

5}, Rebecca E Ready⁶, Joel S Perlmutter^{7

8}, Kelvin L Chou⁹, Stacey K Barton⁷, Michael K McCormack^{10

11}, Julie C Stout¹², David Cella¹³, Jennifer A Miner³, Jane S Paulsen^{14

15}

Affiliations

¹ Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA. carlozzi@med.umich.edu.
² Department of Physical Medicine & Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G213, Ann Arbor, MI, 48109-2800, USA. carlozzi@med.umich.edu.
³ Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
⁴ CHDI Management/CHDI Foundation, Princeton, NJ, USA.
⁵ Department of Psychology, New Jersey City University, Jersey City, NJ, USA.
⁶ Psychological and Brain Sciences, University of Massachusetts, Amherst, MA, USA.
⁷ Department of Neurology, Washington University in St. Louis, St. Louis, MO, USA.
⁸ Department of Radiology, Neuroscience, Physical Therapy, and Occupational Therapy, Washington University in St. Louis, St. Louis, MO, USA.
⁹ Department of Neurology, University of Michigan, Ann Arbor, MI, USA.
¹⁰ Department of Pathology, Rowan University - SOM, Stratford, NJ, USA.
¹¹ Department of Psychiatry, Rutgers University, RWJMS, Piscataway, NJ, USA.
¹² Department of Psychological Sciences, Monash University, Clayton, VIC, Australia.
¹³ Departments of Medical Social Sciences and Preventative Medicine, Northwestern University, Chicago, IL, USA.
¹⁴ Department of Psychiatry and Department of Neurology, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA.
¹⁵ Department of Psychological and Brain Sciences, The University of Iowa, Iowa City, IA, USA.

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.

Keywords: Emotion; Huntington disease; Mental health; Neuro-QoL; PROMIS; Reliability; Validity.

MeSH terms

Adult
Female
Humans
Huntington Disease / psychology*
Male
Mental Health / standards*
Middle Aged
Patient Reported Outcome Measures*
Quality of Life / psychology*
Reproducibility of Results

Abstract

MeSH terms

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