亨廷顿病（HD）患者 PROMIS 和 Neuro-QoL 心理健康测量工具随时间变化的反应性和测试重测信度。
Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD).
机构信息
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
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.
出版信息
Qual Life Res. 2020 Dec;29(12):3419-3439. doi: 10.1007/s11136-020-02596-1. Epub 2020 Aug 19.
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.
背景
大多数亨廷顿病（HD）患者都经历过心理健康症状。患者报告的结果（PRO）测量能够捕捉与心理健康相关的不可观察的行为和感受。本研究旨在测试Neuro-QoL 和 PROMIS 心理健康 PRO 在 24 个月内自我报告和临床医生评估的随时间变化的可靠性和反应性。
方法
在基线、12 个月和 24 个月时，362 名有前驱或显性 HD 的参与者完成了 Neuro-QoL 抑郁计算机适应测试（CAT）、PROMIS 抑郁简短形式（SF）、Neuro-QoL 焦虑 CAT、PROMIS 焦虑 SF、PROMIS 愤怒 CAT 和 SF、Neuro-QoL 情绪/行为失控 CAT 和 SF、Neuro-QoL 积极影响和幸福感 CAT 和 SF 以及 Neuro-QoL 耻辱感 CAT 和 SF。参与者在每个时间点完成了几项临床医生管理的测量，以及在 12 个月和 24 个月时完成了几项总体变化的评估。评估了可靠性（测试-重测可靠性和测量误差）和反应性（使用标准化反应均值和一般线性模型）。
结果
所有 PRO 的测试-重测可靠性和测量误差均很好（所有 ICC 均为≥.90，测试-重测可靠性和所有 SEM 百分比均≤6.82%）。此外，Neuro-QoL 和 PROMIS 心理健康 PRO 的 12 个月和 24 个月的反应性通常得到支持；与临床医生评定的变化锚点（例如，24 个月变化时，下降组的 SRM 范围为.38 至.91，而 12 个月变化时为.09 至.45，大多数大于.25）的相关性要强于与自我报告的变化锚点（例如，24 个月变化时，下降组的 SRM 范围为.02 至.75，而 12 个月变化时为.09 至.45，大多数大于.16）。
结论
Neuro-QoL 和 PROMIS 心理健康 PRO 在 HD 患者中表现出良好的心理测量可靠性，以及对自我报告和临床医生评估的随时间变化的反应性。
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