Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease.
Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease.
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DOI：
10.3233/jhd-190385
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发表时间：
2020
期刊：
影响因子：
--
通讯作者：
Ready RE
中科院分区：
文献类型：
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作者：
Carlozzi NE;Boileau NR;Hahn EA;Barton SK;Cella D;McCormack MK;Ready RE
社会健康是亨廷顿病（HD）患者的一个重要问题;然而，很少有文献研究这一结构在这一人群中。虽然横断面数据支持两个神经生活质量社会健康措施的HD患者的临床效用，但仍需要数据来确定其纵向有效性。参与者（N = 358）完成了基线和至少一次随访（12个月和24个月）评估，包括完成神经生活质量社会健康计算机适应性测试（CAT）和简短表格（参与社会角色和活动[SRA]的能力和SRA满意度）。使用组内相关性检查重测信度，并使用Bonferroni事后对比的单因素方差分析来确定是否有组间差异，预显，早期和晚期HD参与者的社会健康措施。此外，标准化反应均值用于检查纵向反应性，混合或一般线性模型用于检查随时间的变化（相对于自我报告的关于社会健康的相关锚项目的变化和基于UHDRS总功能能力评分的临床医生评定的变化）。测量的重测信度非常好（不同测量的ICC范围为0.82至0.87），疾病负担较大的人比疾病过程早期的人报告了更多的社会健康问题（所有p < 0.0001）。除了参与SRA CAT的能力之外，所有措施都支持响应性;自我报告或临床医生评定的健康状况下降的参与者通常在神经生活质量指标上有12个月和24个月的下降。研究结果表明，这些措施可能是有用的研究，试图评估随着时间的推移在社会健康的变化。
Social health is an important concern in persons with Huntington’s disease (HD); however, there is little literature examining this construct in this population. While cross-sectional data supports the clinical utility of two Neuro-QoL social health measures in persons with HD, data is still needed to establish their longitudinal validity. Participants (N = 358) completed baseline and at least one follow-up (12- and 24-month) assessment that included the completion of Neuro-QoL Social Health computer adaptive tests (CATs) and short forms (for Ability to Participate in Social Roles and Activities [SRA] and Satisfaction with SRA). Test-retest reliability was examined using intra class correlations, and one-way ANOVAs with Bonferroni post-hoc contrasts were used to determine whether there were group differences among premanifest, early- and late-stage HD participants on the Social health measures. In addition, standardized response means were used to examine longitudinal responsiveness, and mixed or general linear models were used to examine change over time (relative to self-reported change on an associated anchor item about social health and clinician-rated change based on Total Functional Capacity scores from the UHDRS). Test-retest reliability of the measures was excellent (ICCs ranged from 0.82 to 0.87 across the different measures) and persons with greater disease burden reported more problems with social health than those at earlier stages in the disease process (all p < 0.0001). Responsiveness was supported for all measures except the Ability to Participate in SRA CAT; participants who had self-reported or clinician-rated declines in health generally had 12- and 24-month declines on the Neuro-QoL measures. Findings indicate that these measures may be useful for studies attempting to assess change in social health over time.