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- Title
Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD).
- Authors
Carlozzi, Noelle E.; Boileau, Nicholas R.; Roché, Matthew W.; Ready, Rebecca E.; Perlmutter, Joel S.; Chou, Kelvin L.; Barton, Stacey K.; McCormack, Michael K.; Stout, Julie C.; Cella, David; Miner, Jennifer A.; Paulsen, Jane S.
- 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.
- Subjects
STATISTICAL reliability; MENTAL health; COMPUTER adaptive testing; MEASUREMENT errors; PATIENT reported outcome measures; HUNTINGTON disease
- Publication
Quality of Life Research, 2020, Vol 29, Issue 12, p3419
- ISSN
0962-9343
- Publication type
Article
- DOI
10.1007/s11136-020-02596-1