Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD).
Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD).
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DOI：
10.1007/s11136-020-02596-1
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发表时间：
2020-12
期刊：
影响因子：
--
通讯作者：
Paulsen JS
中科院分区：
文献类型：
--
作者：
Carlozzi NE;Boileau NR;Roché MW;Ready RE;Perlmutter JS;Chou KL;Barton SK;McCormack MK;Stout JC;Cella D;Miner JA;Paulsen JS
大多数亨廷顿病(HD)患者都有精神健康症状。患者报告结果(PRO)测量能够捕获与心理健康相关的不可观察的行为和感觉。目前的研究旨在测试在24个月的过程中，神经生活质量和心理健康专家对自我报告和临床医生评估的变化的可靠性和反应性。在基线、12个月和24个月时，362名有先兆或显性HD的参与者完成了神经生活质量抑郁计算机自适应测验(CAT)、抑郁简表(SF)、焦虑CAT、焦虑SF、愤怒CAT和SF、情绪/行为控制障碍CAT和SF、Neuro-QOL积极情绪和幸福感CAT和SF、以及Neuro-QOL污名CAT和SF。参与者在每个时间点完成了几项临床医生管理的措施，并在12个月和24个月时完成了几项全球变化评级。对信度(重测信度和测量误差)和响应性(使用标准化反应方法和一般线性模型)进行了评估。所有专业人员的重测信度和测量误差都很好(所有国际商会重测信度≥均为0.90，所有扫描电子显微镜百分比≤均为6.82%)。此外，12个月和24个月的反应性普遍支持神经生活质量和促进心理健康的专业人士；与临床医生评定的变化锚相关的结果(例如，24个月变化组的SRM在0.38到0.91之间，12个月变化组的SRM在0.09到0.45之间，12个月变化组的SRM大多在0.25以上)，通常比那些与自我报告的变化锚相关的结果更可靠(例如，下降组的SRM在0.02到0.75之间，其中大多数下降组的SRM在0.39以上，09到0.45之间，大多数在0.16以上的12个月变化)。在HD患者中，神经生活质量和PROMIS心理健康专家表现出强大的心理测量学可靠性，以及对自我报告和临床医生评估的变化的反应能力。
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. 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. 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). 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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影响因子：
9.9
作者：
Cella, D.;Lai, J-S.;Moy, C.
通讯作者：
Moy, C.
影响因子：
3.5
作者：
Carlozzi, N. E.;Schilling, S.;Stout, J. C.
通讯作者：
Stout, J. C.
影响因子：
4.3
作者：
Andresen, EM;Lollar, DJ;Meyers, AR
通讯作者：
Meyers, AR
DOI：
10.3233/jhd-140115
发表时间：
2014
期刊：
Journal of Huntington's disease
影响因子：
--
作者：
Carlozzi NE;Miciura A;Migliore N;Dayalu P
通讯作者：
Dayalu P
影响因子：
6.7
作者：
Berrios, GE;Wagle, AC;Hodges, JR
通讯作者：
Hodges, JR