TY - JOUR
T1 - Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)
AU - Carlozzi, Noelle E.
AU - Boileau, Nicholas R.
AU - Roché, Matthew W.
AU - Ready, Rebecca E.
AU - Perlmutter, Joel S.
AU - Chou, Kelvin L.
AU - Barton, Stacey K.
AU - McCormack, Michael K.
AU - Stout, Julie C.
AU - Cella, David
AU - Miner, Jennifer A.
AU - Paulsen, Jane S.
N1 - Publisher Copyright:
© 2020, Springer Nature Switzerland AG.
PY - 2020/12
Y1 - 2020/12
N2 - 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.
AB - 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.
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U2 - 10.1007/s11136-020-02596-1
DO - 10.1007/s11136-020-02596-1
M3 - Article
C2 - 32813263
AN - SCOPUS:85089660167
SN - 0962-9343
VL - 29
SP - 3419
EP - 3439
JO - Quality of Life Research
JF - Quality of Life Research
IS - 12
ER -