Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
J Huntingtons Dis. 2020;9(1):83-97. doi: 10.3233/JHD-190385.
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.
社会健康是亨廷顿病（HD）患者的一个重要关注点；然而，关于这一人群的这一结构，文献很少。
虽然横断面数据支持在 HD 患者中使用两种神经健康状况简表社会健康测量来评估临床效用，但仍需要数据来确定其纵向有效性。
参与者（N = 358）完成基线和至少一次随访（12 个月和 24 个月）评估，包括完成神经健康状况简表社会健康计算机自适应测试（CAT）和简短形式（用于参与社会角色和活动的能力和对社会角色和活动的满意度）。使用组内相关系数（ICC）检验测试-重测信度，使用单向方差分析（ANOVA）和 Bonferroni 事后检验比较预表现期、早期和晚期 HD 患者在社会健康测量方面的组间差异。此外，还使用标准化反应均值来检验纵向反应性，使用混合或一般线性模型来检验随时间的变化（相对于与社会健康相关的锚定项目的自我报告变化和基于 UHDRS 的总功能能力评分的临床医生评估的变化）。
这些措施的测试-重测信度非常好（不同措施的 ICC 范围从 0.82 到 0.87），并且疾病负担较重的患者报告在社会健康方面存在更多问题，比疾病进程早期阶段的患者更为严重（所有 p < 0.0001）。除了参与社会角色的能力 CAT 外，所有措施都支持反应性；那些自我报告或临床医生评估健康状况下降的参与者通常在神经健康状况简表测量上有 12 个月和 24 个月的下降。
研究结果表明，这些措施可能有助于评估随着时间的推移社会健康的变化。
