Department of Neurology, University Hospital of Bonn, Bonn, Germany.
Mov Disord. 2010 Apr 15;25(5):587-95. doi: 10.1002/mds.22740.
Patient-based measures of subjective health status are increasingly used as outcome measures in interventional trials. We aimed to determine the variability and predictors of subjective health ratings in a possible target group for future interventions: the spinocerebellar ataxias (SCAs). A consecutive sample of 526 patients with otherwise unexplained progressive ataxia and genetic diagnoses of SCA1 (117), SCA2 (163), SCA3 (139), and SCA6 (107) were enrolled at 18 European referral centers. Subjective health status was assessed with a generic measure of health related quality of life, the EQ-5D (Euroqol) questionnaire. In addition, we performed a neurological examination and a screening questionnaire for affective disorders (patient health questionnaire). Patient-reported health status was compromised in patients of all genotypes (EQ-5D visual analogue scale (EQ-VAS) mean 61.45 +/- 20.8). Specifically, problems were reported in the dimensions of mobility (86.9% of patients), usual activities (68%), pain/discomfort (49.4%), depression/anxiety (46.4%), and self care (38.2%). Multivariate analysis revealed three independent predictors of subjective health status: ataxia severity, extent of noncerebellar involvement, and the presence of depressive syndrome. This model explained 30.5% of EQ-VAS variance in the whole sample and might be extrapolated to other SCA genotypes.
患者主观健康状况的衡量标准越来越多地被用作干预试验的结果衡量标准。我们旨在确定未来干预可能目标人群的主观健康评分的变异性和预测因素：脊髓小脑共济失调（SCA）。在 18 个欧洲转诊中心，连续纳入了 526 名患有不明原因进行性共济失调且遗传诊断为 SCA1（117 例）、SCA2（163 例）、SCA3（139 例）和 SCA6（107 例）的患者。使用通用健康相关生活质量衡量标准，即 EQ-5D（Euroqol）问卷评估主观健康状况。此外，我们还进行了神经学检查和情感障碍筛查问卷（患者健康问卷）。所有基因型的患者（EQ-5D 视觉模拟量表（EQ-VAS）平均 61.45 +/- 20.8）的患者报告的健康状况都受到影响。具体而言，在移动性（86.9%的患者）、日常活动（68%）、疼痛/不适（49.4%）、抑郁/焦虑（46.4%）和自我护理（38.2%）方面均报告存在问题。多变量分析显示，主观健康状况的三个独立预测因素：共济失调严重程度、非小脑受累程度和抑郁综合征的存在。该模型解释了整个样本中 EQ-VAS 方差的 30.5%，并可能外推至其他 SCA 基因型。
