Center for Neurodegenerative Diseases (CEMAND), Department of Medicine, Surgery and Odontoiatry, University of Salerno, 84131, Salerno, Italy.
Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Naples, Italy.
Neurol Sci. 2019 Dec;40(12):2587-2594. doi: 10.1007/s10072-019-04010-2. Epub 2019 Jul 26.
Progressive supranuclear palsy (PSP) is a rare rapidly progressive, neurodegenerative disease characterized by falls and ocular movement disturbances. The use of health-related quality of life (HR-QoL) measures allows assessing changes in health status induced by therapeutic interventions or disease progress in neurodegenerative diseases. The PSP-QoL is a 45-item, self-administered questionnaire designed to evaluate HR-QoL in PSP.
Here, the PSP-QoL was translated into Italian and validated in 190 PSP (96 women and 94 men; mean age ± standard deviation, 72 ± 6.5; mean disease duration, 4.2 ± 2.3) patients diagnosed according to the Movement Disorder Society criteria and recruited in 16 third level movement disorders centers participating in the Neurecanet project. The mean PSP-QoL total score was 77.8 ± 37 (physical subscore, 46.5 ± 18.7; mental subscore, 33.6 ± 19.2). The internal consistency was high (Cronbach's alpha = 0.954); corrected item-total correlation was > 0.40 for the majority of items. The significant and moderate correlation of the PSP-QoL with other HR-QoL measures as well as with motor and disability assessments indicated adequate convergent validity of the scale. Gender and geographic location presented a significant impact on the PSP-QoL in our sample with women and patients from the South of Italy scoring higher than their counterparts.
In conclusion, the Italian version of the PSP-QoL is an easy, reliable and valid tool for assessment of HR-QoL in PSP.
进行性核上性麻痹(PSP)是一种罕见的快速进行性神经退行性疾病,其特征为跌倒和眼球运动障碍。使用健康相关生活质量(HR-QoL)的衡量标准可以评估治疗干预或神经退行性疾病进展引起的健康状况变化。PSP-QoL 是一个 45 项的、自我管理的问卷,旨在评估 PSP 患者的 HR-QoL。
在这里,PSP-QoL 被翻译成意大利语,并在 190 名 PSP 患者(96 名女性和 94 名男性;平均年龄 ± 标准差,72±6.5;平均病程,4.2±2.3)中进行了验证,这些患者根据运动障碍协会的标准诊断,并在参与 Neurecanet 项目的 16 个三级运动障碍中心招募。PSP-QoL 的平均总分是 77.8±37(身体子评分,46.5±18.7;心理子评分,33.6±19.2)。内部一致性很高(Cronbach's alpha=0.954);大多数项目的校正项目-总分相关性大于 0.40。PSP-QoL 与其他 HR-QoL 衡量标准以及运动和残疾评估的显著和中度相关性表明该量表具有足够的收敛有效性。在我们的样本中,性别和地理位置对 PSP-QoL 有显著影响,女性和来自意大利南部的患者比他们的同行得分更高。
总之,意大利语版 PSP-QoL 是一种评估 PSP 患者 HR-QoL 的简单、可靠和有效的工具。