Pagnini Francesco, Lunetta Christian, Rossi Gabriella, Banfi Paolo, Gorni Ksenija, Cellotto Nadia, Castelnuovo Gianluca, Molinari Enrico, Corbo Massimo
Department of Psychology, Catholic University of Milan, Italy.
Amyotroph Lateral Scler. 2011 Mar;12(2):105-8. doi: 10.3109/17482968.2010.502941. Epub 2010 Jul 26.
Existential well-being (EWB) and spirituality issues are important factors in determining quality of life (QoL) in amyotrophic lateral sclerosis (ALS) patients. No conclusive data among the relation between patient's EWB, their spirituality and caregivers' QoL are available. In the mainframe of a longitudinal study, we performed a cross-sectional analysis aimed to investigate EWB and spirituality issues in sporadic ALS (SALS) patients and the relations with caregivers' psychological features. Thirty-seven SALS patients, together with their caregivers, consecutively recruited at NEuroMuscular Omnicentre, in Milan, were included in this study. EWB and spirituality questions were administrated to patients and caregivers. Caregivers also completed questionnaires about quality of life (MQoL-SI), care burden (ZBI), depression (BDI) and anxiety (STAI). Both EWBs and questions about spirituality of SALS patients showed a positive correlation with MQoL-SI and EWBs in their caregivers. Conversely, SALS patients' EWB and spirituality were negatively correlated with caregivers' STAI, BDI and ZBI scores. In conclusion, existential well-being, as well as spirituality issues, perceived by SALS patients seems to be directly related with quality of life, severity of mood disturbance and burden experienced by their caregivers.
存在幸福感(EWB)和精神性问题是决定肌萎缩侧索硬化症(ALS)患者生活质量(QoL)的重要因素。目前尚无关于患者的存在幸福感、精神性与其照料者生活质量之间关系的确切数据。在一项纵向研究的框架内,我们进行了一项横断面分析,旨在调查散发性ALS(SALS)患者的存在幸福感和精神性问题,以及它们与照料者心理特征的关系。本研究纳入了在米兰神经肌肉综合中心连续招募的37例SALS患者及其照料者。对患者和照料者进行了存在幸福感和精神性问题的问卷调查。照料者还完成了关于生活质量(MQoL-SI)、照料负担(ZBI)、抑郁(BDI)和焦虑(STAI)的问卷。SALS患者的存在幸福感和关于精神性的问题均与他们照料者的MQoL-SI和存在幸福感呈正相关。相反,SALS患者的存在幸福感和精神性与照料者的STAI、BDI和ZBI得分呈负相关。总之,SALS患者所感知到的存在幸福感以及精神性问题似乎与生活质量、情绪障碍的严重程度及其照料者所经历的负担直接相关。